Eventful Weeks

A couple of weeks ago I went off all my meds.  I’d been perfectly compliant since January 2nd, but I was planning to kill myself the next morning so I didn’t see much point in taking the medication anymore.  I missed them all for 6 days straight, until having to confess to Sadie.  I told her I’d restart them but needed to consult Brent for instructions on the Lamictal.  I immediately went to the receptionist and asked if Brent’s nurse was available for a few minutes.  She took me back to her office where I confessed what I had done and she told me to just restart them all.  I pointed out that I’d previously been told (by Dr. Bhatia in inpatient) that if I missed Lamictal for over 3 days I should restart at the lowest dose.

The nurse sent me back to the waiting room for about 15 minutes while she waited for an opportunity to talk to Brent.  She came back out and said he’d given the same advice she did.  She asked if I could contract for safety and I said yes.  She told me to keep my appointment coming up the next Tuesday and to call if I had a problem before then.

I felt perfectly fine off my meds.  I had some fatigue, but my mood was stable.  This definitely did not encourage me to take the meds again, even though I know that state won’t last.  When I did get to see Brent, I asked to try getting off some of the medication.  We agreed that this month he’d reduce the Latuda dose to 20 mg with the aim of eliminating it next month, and if there was a negative impact on my mood he’d increase the Lamictal to compensate.

There has been an impact.  Yesterday I woke up at 4:30 in the morning and was too restless to stay in bed, so I got up and went to work super early and ate breakfast in the cafeteria.  Then I got the giggle fits over and over again.  Initially I looked at an “oral hygiene kit” and thought, “What if we had anal hygiene kits?  Oh wait, they’re called enemas.”  I laughed so hard I nearly suffocated, and after this happened several times throughout the day my coworkers suggested drug testing me.

I crashed from this elated mood around 3 pm and felt inexplicably sad, then got super irritable for the rest of the evening.  We went grocery shopping and out to eat and I had some very unkind thoughts about every person who crossed my path.  Today is not so bad.  I’ve been very motivated and accomplished most of the to-do list that I wrote on my arm yesterday.  I’ll definitely keep an eye on the mood, but I already suspect Brent is going to need to increase the Lamictal.

A few days after I went off the meds on my own, I had a very eventful day.  I was scheduled for a mental exam with a psychologist for him to determine whether I was disabled, because Social Security couldn’t seem to figure it out from my records.  Spoiler: he said I wasn’t and my claim was denied a few days later.  Since applying, however, I’ve started to feel much better and more capable and I’m not going to pursue it any further.

In the middle of the mental exam, after I couldn’t remember 3 words after 5 minutes and started to get confused by repeating a series of numbers backwards, there was a knock at the door.  The psychologist asked if I was expecting someone, which seemed like a rather weird question, but it turned out the knock was for me.  Mom was at the door saying, “I have to go to the hospital now.  Bye.”  Not specific enough!  I said, “What hospital?  Why?” and she said, “Christ.  Kidney.  Bye.”

Yes, I was finally able to use the Hello Kidney gift.  Monday of last week, mom got a kidney transplant.  I completed my mental exam, which was rather unfair since I was too distracted to elaborate on the difficulties I have at work, and rushed home to pack a suitcase for mom and then rushed to the city to be with her until the surgery.  The doctors had to give her several units of plasma because her blood was too thin, plus three different antibiotics, so it was around 8:40 before they finally took her down to the operating room.

Mom was in the hospital for 10 nights, but I finally got to bring her home on Thursday.  Her news certainly overshadowed my acceptance to college.  Today I’ve worked super hard on preparing for that.  I received and replied to an e-mail from my academic adviser and have an appointment to meet with her in 2.5 weeks.  I e-mailed the disability services office at the college to request a meeting time to discuss possible accommodations.  I e-mailed the vocational rehab counselor who I worked with for job hunting last year to see if there is any assistance he can provide with continuing education.

I’ve also been busy with the Crisis Intervention Team.  I prepared a Google Drive where we can store the handouts from each presenter so that the participants can access them at any time.  I sent information out to everyone who was present at the last meeting so they can see the format and make sure everything is working okay.

Other busyness has included working on my book (a chapter and a half plus the epilogue to go) and changing my name.  I’d been going by a nickname for 17 years but still use my legal name for things like employment and medical care, so Sadie pointed out that I might be feeling inner conflict due to this incongruity.  She suggested that I needed to choose one, and due to my laziness I chose to go back to my legal name.  It’s not what I wanted and I’m unhappy about the choice, but I didn’t want to deal with a name change and updating my driver’s license and debit card and all those other documents.  I didn’t realize until after the fact that I would have a few hundred internet accounts to update.

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A Change in Perspective

When I wrote Hello Kidney, that was my reason to stay alive.  I’d had a rough day at work on Friday, and followed it up by reading a post on a mental illness message board that struck a nerve.  The board discourages discussion of personality disorders, under the premise that medication does not help them (which I disagree with – I believe there are some symptoms involved that medication can alleviate).  There was a poster who I had greatly admired due to his ability to work in an inpatient psych unit despite his own mental illness.  At least I admired him until he expressed his belief that people with Borderline Personality Disorder give themselves papercuts or take a single benzo and then run to the ER crying that they attempted suicide, taking up resources that should be saved for people with real mental illness.

I was angry.  I have never been openly judged for my mental illness, and to have it done by a fellow sufferer AND mental health professional was an extra blow.  Unfortunately, I internalize anger.  Instead of blaming him for making a callous comment, I blamed myself for being unfit for society.  Maybe all those nights I spent in inpatient last year really did mean resources were being wasted on me.  Maybe I’m not worth saving.  I was busy at my second job for a few more hours, but then I headed home, where I picked up a disposable razor and went back out to wander in the night time.

I thought I’d be going somewhere secluded and sitting in my car as I broke open the razor and slit my wrists with the blade.  First, though, I went to Steak ‘n Shake, where I stuffed myself with comfort food and wrote in my journal.  As I wrote, I thought about how I couldn’t die yet, as I still might be able to donate a kidney to mom.  So I planned for that potential surgery and started researching how I could increase my risk of dying from it.

Despite the lack of immediacy to my suicide plan, I knew I should be calling the on-call therapist.  I couldn’t make myself do it.  I can’t be anonymous if calling in the middle of the night, as the therapist has to be contacted and then return the call.  Also, the chances are ever-increasing that the person on-call will turn out to be someone I know.  Finally, I feared being asked to come to the ER for an in-person psych evaluation, and potentially having cops sent after me if I refused.

Instead of calling, I browsed the internet and found Crisis Text Line.  The idea of not having to speak aloud to someone was appealing.  I entered the number into my contacts, but hesitated before sending a text.  Some other customers were creating a spectacle, and watching them distracted and entertained me enough that I was able to safely return home and crawl into my bed.

I held on to the idea of donating a kidney, and on Monday morning I called the transplant center.  I was asked 5 questions in rapid succession before being rejected.  My name, mom’s name, whether I had high blood pressure, whether I was on medication for it, and my age.  I argued with the lady, questioning her about the reasoning and asking if I could get a clearance from my doctor to allow it.  She firmly said no.  I understand why high blood pressure is a problem – it’s a leading cause of kidney damage and they wouldn’t want to take a kidney from someone who might end up needing one later on.  However, it does not make sense to reject me when my blood pressure is normal with medication, and it especially does not make sense that my age would make a difference.  Would she have said yes if I were younger?  Older?

My new thing, apparently, is to throw up when I cry.  I hung up and started sobbing, racing for the bathroom as the force of my tears made me gag.  It would be one thing to have found out I wasn’t a match, as that would still leave the option of arranging a kidney exchange, where I donate to a stranger and their loved one donates to mom.  Being rejected entirely was devastating.

Mom can live on dialysis indefinitely, and at this point has accumulated 27 months of wait time, with it usually taking 3 to 5 years to get a kidney (her first one only took about 8 months).  It’s reasonable to think she’ll get one soon without my intervention, but I couldn’t stand the idea of her being on dialysis any longer than necessary.  My thoughts returned to my original suicide plan, the one that got me sent to inpatient the first time.  I had planned to accompany her to an appointment at the hospital, pin a note to my chest requesting she receive one of my kidneys, and shoot myself in the head.  Maybe that would be the best for all of us after all.

The next day I was sitting in the DBT group that I planned on quitting within the next couple of weeks (as soon as we complete the Emotion Regulation module), and on the break I pulled out my phone and started doing research for my plan.  A few minutes later, in the course of our weekly mindfulness exercise, I had a change of perspective.  The exercise consisted of three questions asking us to consider how we could view situations differently in order to change our feelings about them.  How could we make the best of those situations and hold out hope for the future?  I began writing answers that turned out to be about the kidney transplant and the things I could still do to support mom and the overall cause without being able to directly donate a kidney to her.

I had already notified the group leaders that I was quitting, but when I realized something enlightening had just taken place I questioned my decision.  The group ended and I asked Sierra if she had an opening in the next two days in which I could come speak with her.  We arranged it for 8 am today.  Later in the day I was also able to schedule a brief appointment with Sadie for 10:30 am today.

The alarm on my cellphone was set for 6:30 am, but it was the house phone that woke me, at 10:50 am.  Sadie was concerned because I hadn’t shown up for my appointment, and if I hadn’t answered the phone she’d have been sending the police.  Sierra was also concerned, but wondered if there’d been a miscommunication so she merely sent an e-mail to check in with me.  I was very upset to have missed both of these appointments as I really needed to talk to someone, and Sadie and I agreed that I would show up at CMHC at 2 pm and wait, because both her 2 o’clock and 3 o’clock clients have been flaking on their appointments lately.

I was there in the waiting room, doing some writing to fill the time, when Sadie came out at 2:10 pm and told me that client hadn’t shown up (and the next one had already called to cancel).  Our conversation looped around through a lot of topics.  She did her usual sneaky assessment of whether I was safe to roam free, and I assured her that I had no intention of killing myself right now.  A couple of days ago I wasn’t sure I could say that.  A part of me really felt like inpatient would be the best option, if only I thought there was anything they could do to make things better.

Sadie told me that mom still needed me, even if I couldn’t help her in the way that I wanted.  She named off all the people I had worked with at CMHC and said that if I killed myself it would impact them all, not to mention all the people I know through work and school and hobbies and family.  I told her this sounded like an argument in favor of not having relationships and she said it was too late, that even people I no longer have contact with, like Wendy, would be impacted.

I had a thought in my mind about a video I watched recently, made by the blogger when she was planning to kill herself.  I had shared it to Facebook, explaining that I’d had many of the same thoughts she expresses.  The only feedback I got was my mom saying, “You never really felt as bad as that girl, right?”  The thought that came up when Sadie was talking was that the impact would just be people thinking there was something they could have done, when they should have thought of that beforehand.  I didn’t get a chance to express this, as the conversation veered in another direction.

Aside from the issue of suicidal thoughts, Sadie and I discussed the rapid fluctuations in my mood.  Despite feeling down and suicidal one day, I can be bouncing off the walls the next.  The past couple of days I worked 3-11:30 pm and found that I could not get myself into bed afterward.  Last night I spent at least half an hour total pacing back and forth in the break room while waiting for work to do.  I was taking the stairs two at a time, and lately I’ve had the non-stop fidgeting of my left-hand that featured so prominently in last year’s manic episode.  I’m driving too fast (60-70 in a 45 mph zone), going out wandering late at night, getting too generous with gifts, and losing my social anxiety.  From the moment I showed up at work yesterday I answered every single phone call that came into the department, despite having a coworker there for the first 5 hours and despite my usual deep aversion to telephones.

On the one hand, Sadie said she was glad I would be seeing Brent next week because it seems like my medication’s not right.  On the other hand, she said she didn’t want me to pathologize everything about myself.  Some of these behaviors can be my personality without being a sign of illness, and the things I was expressing concern about weren’t actually dangerous, with the exception of speeding.  I tried to explain that it’s the combination of all these factors and the fact that it feels like I did before I ended up in inpatient the first time that worries me.  She asked if I had been manic, depressed, or mixed at that point.  I said mixed.  I’ve never directly said that to anyone in the mental health profession.  I know it was the case, but it’s not officially in my records.

She asked if I’m mixed now and I said no, that it’s rapidly switching between the two, which is a little less dangerous.  Mixed states are bad because you feel the despair of depression and the energy of mania simultaneously and are at increased risk of suicide.  We talked about how to describe my symptoms to Brent in a way that he will take seriously.

I fear what he will say when I complain about moods being up.  I had complained before about being down all the time and sleeping too much and he decreased my dose of Latuda, thinking I might be overmedicated.  Well, that’s clearly not a problem anymore.  Maybe what I want is not possible.  I want to have energy and motivation.  I want to not be bouncing off the walls.  I want to sleep 8-9 hours a night and wake up refreshed.  I want to be able to cry over sad things, but not become suicidal over them.  I want to not feel anxious.

What my medication does now:

Wellbutrin – Mostly keeps me out of suicidal despair.  I still have suicidal thoughts, but they get much worse if I go off the Wellbutrin.  Also, it usually prevents me from crying when I’m upset.  My eyes might get a bit watery, but it has to be something really bad (like the rejection from the transplant center) to induce real tears.

BuSpar – Wipes out the cripplingly severe anxiety, but I still have fear that prevents me from doing certain things.  Except, of course, when I get a bit manic and then all bets are off.

Latuda – Slows down reactions to situations.  Makes me sleep more than I’d like.  If I skip it, I’ll be up all night (although the past few days I’ve been wide awake despite taking it).

A few months ago, I had shared a few medication options with Brent and he said, “#6 is Not An Option“.  That was the point at which he reduced the Latuda.  In looking back over the options I provided, there should have been a #7 and #8.  I didn’t bring up the possibility of lithium, probably because the idea of the frequent blood tests intimidates me, and I didn’t account for the fact that the solution might involve more than one of those changes.  Brent and I need to have a serious conversation next week, because I am just not okay with the way things are right now.

This is why a small part of me wants to go hide in inpatient, because I know something needs changed, and I’m a little scared of doing that with minimal supervision.  I’ve reached the point that I haven’t experienced serious side effects from my medication in a long time, and the idea of new side effects hitting me as I try to make it through my work days is daunting.

Hello Kidney

When I was 16, we were about to go on a big family vacation when mom bailed on us and insisted the rest of us go ahead without her.  She had a good reason – she had been waiting on the kidney transplant list and a match became available for her.  A few months later she was standing next to me as I got my first driver’s license, and I couldn’t say no when asked if I wanted to be an organ donor.  I felt it was wrong to move parts of one human into another human.  Of course I wanted my mother to be alive and in good health, but I was uncomfortable with how it happened.

Fast forward 19 years.  I had the organ donor notation removed from my license a long time back.  Transplanted kidneys don’t last forever, and mom’s first one started failing about 2.5 years ago.  She started dialysis, and went through testing to get back on the transplant list, but her doctor soon suspended her from the list due to an unknown finding on a CT scan.

She’d had a recurring fungal infection in her abdomen, and he feared that if she got a transplant the immunosuppressant medications would cause the infection to return and kill her.  There was a little spot on the CT scan that he insisted was the infection again, and he kept saying things like “take this antibiotic for 6 months and if it goes away we’ll put you back on the list” then “oh, it’s still there – stop the antibiotic for 6 months and if it doesn’t grow we’ll put you back on the list”.

This summer he told her that what showed on the CT scan might be a tiny bit of ureter that had been left behind during a previous surgery, and if she had exploratory surgery and they could find and remove it, then she’d be put back on the list.  Otherwise, she could count on being on dialysis the rest of her life.  She postponed the surgery a bit due to first her prior commitments and then the surgeon’s leg injury, but it was due to be done on October 29th.

Her doctor threw out one last bit of hope a couple of weeks ago, deciding that if she had another CT scan and it still hadn’t grown he might consider letting her back onto the list without having the surgery.  She said it was false hope, but got the test done anyway.  He finally called her Wednesday night and announced that the surgery was cancelled.  As soon as they get the required paperwork done she’ll be back on the transplant list.

The time she spent waiting still counts, so she has 27 months of time accumulated.  There’s a good chance of her getting a kidney quickly.  However, I can’t stand to watch her going to dialysis 3 times a week when there’s a chance that could be stopped sooner.  Tomorrow I’ll be calling the transplant center to find out how I get tested to see if I can donate to her.

I still feel really weird and uncomfortable about the idea, but some things have changed in the past few months.  I had my first surgery, an emergency one to remove my gallbladder, and although I was terrified going into it, I found that it wasn’t as bad as I had feared.  The possibility of donating to mom surfaced in my mind, but I still had to work on that problem with moving body parts between bodies.  So I signed up to donate blood.  This wouldn’t have even been considered at the time mom started dialysis, as I’d never had blood drawn in my life before last year, but it has happened repeatedly since then and I figured I could handle them taking even more blood than usual.

I’m not in any rush to go change my driver’s license back to organ donor status, but for my own mother I would give a kidney up.  There’s no guarantee that I’ll be a match, or that they’ll deem me eligible to donate a kidney, but I have to try.  In the meantime, I’ve found a gift to celebrate mom’s future transplant, no matter where it comes from.

hello-kidney