Thursday, June 21, 2018

Well, I got a pleasant surprise yesterday.  Dr. H's (neurologist) nurse called to give me the titration schedule for my medications.  I guess talking with Dr. A (neuropsychiatrist) cleared things up for him enough to support me going forward with ETC.

So the next step is to schedule the procedure.  I should get that phone call today.  Eeek!  I am excited and also a little nervous.  It's getting real now.

Meanwhile, I called my parents, who are going to be staying with us while I get the first rounds of ETC. My dad will drive me to the procedure while my mom will stay home with the kids.  Then they are here to help out, if I don't feel too great afterward (sometimes people have headaches, body/muscle aches and pains, and/or feel lethargic from the anesthesia).

They let me know that it won't work for them to come up until after the week of the 4th of July.  That's another almost three weeks from now.  When every day seems like an impossible struggle right now, that sound like eternity.  I know I can't expect my parents to drop everything for me, but I had hoped they would realize how important this is.  But for all I know, they are booked out several weeks anyway.

So, now I wait for the phone call.


Tuesday, June 19, 2018

No news from either doctor.  I am in a frustrating holding pattern.

A commenter mentioned two alternative treatments:  TMS and ketamine injections.  Neither of those are viable options for me.  TMS is contraindicated in patients with epilepsy and my insurance won't pay for it, plus Dr. A won't do it.  End of story.  My insurance also won't pay for ketamine injections, as it is an off-label use of the medication.  A series of ketamine injections, not including the upkeep injections which are recommended monthly, is about $6000 in the Seattle area.  We simply don't have the money for this.  I already had an expensive, week-long hospital stay this year in March.

I don't have a lot to say right now.  My brain feels foggy and stuffed.  I am having a rough day today, where I feel anxious and overwhelmed.  As usual, my feelings are off kilter to my reality.  I have no reason to feel this way, but try telling that to my brain!

I spent three hours of my day in bed.  During most of that time, I argued with myself, trying to get myself out of bed.  I finally managed to do so and then talked my reluctant kids into a walk.  It is a gorgeous, sunny day and I was hoping getting out would help.  While it certainly didn't hurt, and I am glad that I forced myself out, I was anxious on the entire walk and have been alternatively in tears and having a panic attack since getting back.

I don't know what is next but I hope it is better than this.

Friday, June 15, 2018

Roadblock

So my neurologist is refusing to write a letter saying he is okay with me getting ECT.  From what I gather (from his nurse), it has to do with my medications.  
I take three anti-seizure medications daily.  The whole point of ECT is to initiate a seizure, so Dr. A (the neuropsychiatrist doing the ECT) wants me to stop taking those medications for 24 hours.  Dr. H (my neurologist) says it wouldn't be safe for me to discontinue my seizure medications so he won't write the letter or advise me on how to titrate them down.
Without that letter or titration, Dr. A won't do ECT.  So I am stuck.  
I called Dr. A's office and explained the situation.  So they are going to have Dr. A talk with Dr. H and see if she can't explain things better than I have.
If all else fails, I have an appointment with Dr. H on July 5th.  I feel like if he knows how bad off things are, he will help me to reach a solution.  He is a compassionate man and I know he is probably in a tough spot, too.  
I haven't had a seizure since March.  So it does seem a little counterintuitive to stop taking my medications, even for a brief period.  
But I don't know what to do next if this doesn't happen for me.  I am afraid that I will be sucked into a deep mire of hopelessness if this can't happen.  I know I should keep my mind open to other possibilities for treatment. I just feel as if I have tried so much.  And I am tired of waiting for things to get better on their own.  

Tuesday, June 12, 2018

Memories...

I have lost many of my memories.  I cannot remember many things day to day.  Words to complete sentences.  Words to describe something.  My address.
And when I say forget, this isn't a brief lapse where I stutter for a moment and come up with the right answer.  There is no right answer, it is lost in the fog of my mind.
Then there is my longer term memory.  My childhood is gone.  I can't remember it at all, but brief and blurry glimpses, things that I know more from stories my parents tell me, then actually remembering it myself.  My twenties are a similar blur, with even things like my wedding and buying our first house having fallen away like dried scattered leaves.  I know I did these things.  I just don't remember doing them.
The biggest side effect of ECT is memory loss.  I am trying to prepare to lose even more of my memories; possibly chunks of time around when I get the procedures done.  That's also part of why I want to post here.  It will help me remember this part of my life.
It is also possible that my memory can improve with time.  Depression causes memory problems, so as I am less depressed, it is possible that it might be easier to remember things and not embarrass myself at the pharmacy when I can't remember my own address.  That would be nice.
****
Yesterday, I went to the doctor for a pre-op clearance appointment.  They won't do ECT without making sure you are physically fit enough for the procedure.  I had an EKG (normal), brief exam (normal), and some bloodwork (I assume it will be normal, but I don't actually have the results yet).  Once they have all of that, they send it on to the new psychiatrist.  I also have to get a letter from my neurologist, saying that he is okay with the ECT.  After I have those things done, we can go ahead and schedule the procedures.
My doctor's nurse was funny yesterday.  She kept telling me that I was "so brave".  I don't feel brave. I feel like a coward; I feel like a braver, stronger person would be able to pull themselves up and get back to the living of life without needing to turn their lives upside down and get their brain shocked!  Logically, I know that depression doesn't work that way.  But emotionally, it's a whole other ball game.  I feel a lot of guilt for how much my depression takes over our lives and impacts my children.  I try hard to protect them, but it's getting harder and harder to hide the way I am feeling.
I think the thing that scares me the most about ECT is that it won't work.  That I'll be the 10% it doesn't work for.  But I have to be positive.  Also, I am the ideal candidate for ECT, with a fairly "straightforward" depression (their words, not mine).  I just have to focus on that 90%.


Monday, June 11, 2018

The Darkness

Perhaps you can tell by my past posts, but things are dark here in my world.
It didn't used to be this way, and I hate it.
Even during the infertility years, I was sad, I was stuck, I was angry, I was all sorts of feelings, but I didn't go to bed and stay there.
Things are dark here.
I stay in bed as much as I can.  Sleep is my escape.
Yesterday was a hard day.  I was either sleeping or crying.
The anxiety was bad.  There is no reason to be anxious.  No reason to be sad.  And yet.
Each moment is a struggle. Getting dressed seems akin to climbing a mountain (I do get dressed every day).  Showering seems like too much of an effort (I do try and most days I succeed at getting showered).
Getting the kids dressed and off to school is about all I can handle.  I do make dinner some nights, but my MIL (who stays here to help with the kids Tuesday-Friday) makes dinner the nights she is here.
This makes me feel like an absolute failure as a human being and a parent.  Which makes me even more depressed.  And the cycle continues.
While I am not actively suicidal, thoughts of death are comforting.  I cannot imagine living life feeling this way for fifty more years.
All of this while I have so much to live for, so much to be excited about.  I have three beautiful, healthy children; kids that I wanted so badly.
And now all I want to do is sleep.  Sleep away this life that has become painful to live.
****
I've tried counseling.  I have a psychiatrist and a counselor.  I did a six month DBT course.  I take a high dose of antidepressant.  I take an atypical antipsychotic.  I take rescue medications for the anxiety.  Too many pills when you add in the three I take for my epilepsy (which are also mood stabilizers). 
Last month, my psychiatrist recommended something different.  Something a little scary.
Something called ECT.  From the Mayo Clinic, this is ECT:

"Electroconvulsive therapy (ECT) is a procedure, done under general anesthesia, in which small electric currents are passed through the brain, intentionally triggering a brief seizure. ECT seems to cause changes in brain chemistry that can quickly reverse symptoms of certain mental illnesses.
ECT often works when other treatments are unsuccessful and when the full course of treatment is completed, but it may not work for everyone.
Much of the stigma attached to ECT is based on early treatments in which high doses of electricity were administered without anesthesia, leading to memory loss, fractured bones and other serious side effects.

ECT is much safer today. Although ECT still causes some side effects, it now uses electric currents given in a controlled setting to achieve the most benefit with the fewest possible risks."
My initial reaction?  NO FREAKIN WAY.  There was no way I was going to give myself seizures on purpose.  Plus one of the main side effects is short term memory loss.  My memory is already compromised from all of my seizures, the concussions from falling during a seizure, and, of course, depression causes memory loss.
But the depression this time is debilitating.  I can't live my life this way.  If there is an option, something to try, I can't justify locking myself in this cave of darkness.  Not if there is a way out.
So I started researching ECT.  And I read a book written by Kitty Dukakis, who uses the treatment regularly and feels like it has changed her life.  She and her husband, former Massachusetts governor Michael Dukakis, have become evangelists for the procedure.  And once you start researching, a lot of people have experienced ECT.  And it works for them.  It has a 90% success rate.  90%.
I have always used this blog as a way to process what is happening to me.  I also fully believe that we don't talk enough about mental illness.  And we definitely don't do enough about it. 
After doing my research, doing my reading, and getting more depressed, I have decided to take the leap.  I am doing ECT.  And I plan to write about my experiences here in the hopes that someone else might read it and feel less alone.  And if it works, someone might read it and take the same leap.
Am I scared?  No.  Surprisingly, I am not scared.  I might get scared closer to the actual procedure, but right now? Right now, I am just READY.  I just want to feel better.  I want to be a better human, a better mother, and a happier me.
So today, I do the first step, which is having a pre-op appointment with my primary care physician.  We have to ensure that I am healthy enough to have ECT done.  I have to have an EKG, a physical, a round of bloodwork, and (ironically) a pregnancy test.
I also have to secure a letter from my neurologist, who has to okay me having the procedure done.  He also has to help me with medication changes, as I cannot take my anti-seizure medications for 24 hours prior to the procedure.
So.  I am in a pit of darkness, but I do see a pinpoint of light.  It's there, I know it. I just have to be brave and hang on.

Tuesday, April 17, 2018

Update



Bloggers disappear.  This is a fact of the blogging world.  In my case, I had my beautiful babies and the reason for my writing in the first place no longer existed.

But I always hated finding a blog that I enjoyed and then just have the blog END.  I mean, lives go on after blogging, right?

In my case, life has most certainly gone along.  My children are practically teenagers!  Okay, perhaps not.  But Will is nine you guys, almost ten!  I can't believe how fast he has grown up into this little person, but he has. He is in third grade and doing all sorts of things, like writing book reports, doing division, and getting up in assemblies and giving speeches.  He enjoys playing Minecraft (it's an obsession, really) and is a purple belt in Tae Kwon Do.  We still enjoy snuggling on the couch for a movie or tv show, but when we put our hands up together to measure, his thumb is bigger than mine.  He delights in this and I want to cry.

Emma Drace.  Seven years old and so sweet, smart, and silly that she just makes me smile.  She is obsessed with a youtube personality (JoJo Siwa) and wears her hair in the same side ponytail, complete with large, borderline obnoxious hairbows, which she is collecting.  She has a best friend (known as a BFF) that she loves to pieces.  She recently tested into the Hi-Cap (highly capable) program at her school.  She always brings home little notes that applaud her behavior and her teacher loves her.  She has been easy from day one, and I now am not afraid to say it.  I'm really lucky God blessed me with this amazingly precious little girl.

Andrew.  My gosh you guys, he has so much personality that I don't even know where to begin.  True to third child form, he is my little comedian.  He makes me laugh on an almost hourly basis.  He loves anything army-related and loves playing with little green army men and tanks and trucks.  He is in pre-school and will (gasp) start kindergarten in the fall.  I am still his #1 girl, although he has a "girlfriend" at school and they tell each other they love each other every day as we leave the parking lot.  SO. CUTE.

My kids are healthy, happy, and growing up way too fast!  I miss their baby days so much it hurts sometimes.  My mom asked me why I hate them growing up when the alternative is no good.  God forbid that anything happen like that!  I just loved being a mommy to small kiddos.  I knew how to fix boo boos and clean up spilled juice and change a diaper.  I can read in silly voices, build a tent fort, and generally just know how to be a mom to little kids.  These big kids are a puzzle, a challenge that I feel ill prepared for.  I always wanted Real Life Babies, and now I have Real Life Kids.  I want to be the best mom for them possible and sometimes I realize how I am not quite up to the task.  It's a big job.

I am still working parttime from home.  I enjoy what I do and who I do it for.  I am truly blessed to be able to work at home as I still cannot drive.  That's right, nearly three years since I sat behind the wheel of a car.  Wait, that's a lie.  I sat behind the wheel a few weeks ago as we were just sitting in the parking lot.  I put my hands on the wheel and it is amazing that feeling of power that you can get just from driving a car.  I know it's an easy thing for you to take for granted, I know I always did.  Just be grateful if you can drive yourself to the grocery store or anywhere, really.  But I really miss just running to the grocery store for milk or juice or whatever.  I miss the independence that driving brings.  Since I am still having regular seizures, there is no driving anywhere in my near future.

How am I, really?  People ask me that, knowing we are going on three years of dealing with chronic illness and managing three young kiddos.  The truth is, I am very lucky.  We have been surrounded by family throughout this time.  I am rarely alone with the kids, which is hard, but also a blessing when I have seizures or days when I don't feel well.  The medications that I take are sedating and I am tired a lot of the time.  I also have insomnia, which doesn't help the constant fatigue.  So it is nice that my mother-in-law makes dinner most nights.  My kids have been surrounded by love and care have seen how family pulls together in times of need.  I see the compassion in them that shows they have been handled with that same compassion.  We do what we know, right?

I am also very depressed.  Mental illness is something that I think we are all getting better about speaking out about.  I wrote about my post-partum depression with the kids.  This is the same beast that I know so well.  It is an overwhelming monster that eats away my joy and eeks out my life.  There are days when I get out of bed, only to stumble back into it once the kids are at school.  I am seeing a psychiatrist and counselor regularly.  I have been to support groups and done a six month seminar on handling anxiety and depression.  I take two very strong medications to help address the depression itself.  I do everything that I can to fight this monster from taking over everything.  It's a daily battle.  But my kids are worth it.  I'm worth it.

From time to time, I check in here and I almost can't recognize the girl that once wrote all of these words.  I had so much energy, so much joy for life.  Even when things were crappy, I still felt blessed.  I still feel that way.  I have been so fortunate to have the help that I have had along the way.  But I just want to be ME again.  I just want to have energy, joy, and a zest for life.  I want to live my life, not just survive it.  I am trying very desperately to make that happen.