Sunday, June 30, 2013

Another seizure

Apparently yesterday I had another seizure.  This time, I was at the laundry room at our apartment complex (2 parking lots from our apartment).  It's assumed, though no one saw, that that is where I had my seizure (since I had apparently started the dryer before losing it).  When I came to, I started walking.  Having no idea who or where I was, I walked in any random direction.  Though, luckily (I guess) with a bum hip and heart issues, I didn't get too far.  Only about a mile away before passing out (heart issues=low blood pressure) on the side walk of a bridge.  Someone called 911 and there I was again, in that place I'm so ashamed of.

At least I had my phone and wallet with me this time.  They were able to figure out who I was due to my my bracelet and my husband called while I was with the EMTs. He wasn't far away, so he came and met me.  He saved me from having to go to the hospital and from being admitted yet again.

On the bright side, I made it through the weekend without ending up in the psych ward as I was so terrified of doing.  My husband has left for work for the day, and won't be back until 2:30p or so.  At which point we have a list of things that need to be done.  I'm not calling my doctors until then because he's afraid the stress might be enough to push me over the edge again.

I don't know what to do.  I feel trapped in my own life.  Do I go out and do things that I know need to be done?  Grocery shopping, paying bills, making doctor appointments, dealing with health insurance, changing coverage on my car insurance?  What can I do?  What is safe?  What if the things I feel are safe in this moment, are no longer safe 10 minutes from now?  What then? 

Terror.  Constant terror.  I can't just decide, oh this is too much, I should go home.  That never works.  It's too late by then.  It's like being in a crowded room and realizing there's not enough air for everyone.  There's no way out.  It's over.

I have struggled with agoraphobia to some extent most of my adult life.  Days like these, when I feel like going outside will certainly lead to my hospitalization, only make that fear more real and substantiated.

I feel like I have no reason to go on.  But that's not true.  I'm going through all this so that I may eventually have a child.  And when I get there, this will all be worth it.

Saturday, June 29, 2013

Friday, not anymore

So, to preface this post, I woke up Friday and began writing a post.  I can't tell you where it was going, or much of what happened after.  But here's the draft I found today when I turned on my computer...

It's Friday, and I actually managed to fall asleep last night.  Though, it was a slightly excessively drug-induced sleep, it was finally sleep nonetheless.  I had several panic attacks last night and my paranoid thoughts were running wild.  I was hearing people in the living room.  I heard them talking softly outside my bedroom window.  I was terrified.  I knew I needed to fall asleep or things would not end well.  So I found the diphenhydramine and took 400mg.  A bit excessive, maybe.  But I knew it wasn't enough to kill me and I was desperate. Within an hour or so, I was asleep.
Waking up this morning, I was still having overwhelming thoughts.  The hallucinations had calmed a bit, they were manageable again. However, it was now more obvious than ever that I definitely have no choice but to go back to seeing a psychiatrist.  I hate to think what could have happened had I not been able to fall asleep and get some reprieve from the crazy.  I feel certain I would have completely lost it.
My husband is still asleep, I hate to wake him up so early.  I will definitely have to talk to him about what happened and how badly I need to get some anxiety medicine.  I don't want to go back to the hospital.  I hate it there.  But if today keeps going like it is, and ends up like a repeat of last night, I have no doubt that's where I'll end up.  Or worse.  I should go talk to him. 

From what my husband told me, he woke up to me laying next to him (dressed for the day), around 8a, having a seizure.  I don't know how long I had been there, I don't know how I got there.  I didn't know who I was or where I was or who this man was. 

I have psychogenic seizures brought on by stress.  In appearance, they look like grand mal seizures.  The only difference is with psychogenic seizures there's no electrical malfunction in the brain.  It's a conversion disorder.  However, that alone does not explain my lack of memory.  The large majority of the time, if I have a seizure, I will also have accompanying (typical for me is 1-2 day) dissociative amnesia. 

I've been dealing with this for years, but only recently got diagnosed a year or so ago so I had something to call it.  Some reason to tell hospital staff that I WASN'T just making it up.  I had test results and other doctors to finally back me up. 

But that's beside the point.  I lose a lot of my life because of this.  I lost my job, the best job I have ever had, because of this.  They tried to take away my drivers license, and it kept me from driving for about a year.  I was able to keep my license because driving is my stress relief.  Driving aimlessly will calm me down faster than any medication.  That is, assuming I'm able to get in a car and go before I NEED the medication.  And I'm aware of my limitations.  I take the bus pretty much everywhere.  I'm very cautious and constantly on guard for any kind of stress I may be feeling.  I almost never drive, but I like having the option in case of emergency or something.  I'm not reckless. 

Back to the original point of this post, I definitely have to go back to the doctor.  I'm seriously hoping nothing gets too bad before Monday, because that will mean hospital visit for sure.  So I just need to make it the next 48 hours.  I also discovered, Thursday, that my previous psychiatrist (whom I wasn't a huge fan of, but he really is a good doctor) is now the inpatient doctor at the local psych ward.  I'm so happy about this.  The previous doctor was such a jerk.  And you could tell he hated his job.  But now it will take even longer to get an appointment with someone.  I'll likely have to go through intake again since it's been a few months since I've been seen.  But those are worries for another day.  Today, I get to pick up the pieces of my life and try to put them back in a box.

Though, I will say one good thing about days when I have seizures/amnesia, my house is always spotless when I get back!  Apparently not really me is a neat freak and I am completely okay with that.

Thursday, June 27, 2013

Seeking Professional Help

The bane of my existence is admitting that anything is wrong with me.  Ever.  I've been known to walk around with blood running down my face (from falling and hitting my head), in excruciating pain, and refuse to recognize something has happened because "No.  I'm fine." 

The real problem comes in when I start doing this, not only with physical symptoms, but with mental symptoms.  It just seems like finding that line is so difficult.  One day you cross it when you see a shirt laying on the living room floor and it's so overwhelming you can't breath.  The next day it's not even in sight when you find out your best friend is moving across the country.  And what is that line, anyways?  Is it when you start having increased symptoms?  Is it when you get overwhelmed?  Is it when your stress levels are too high?  How can you pinpoint something that is so subjective?

My husband agreed to support me with my decision to stop taking all my medication earlier this year with the understanding that if I feel I'm approaching that elusive 'line' I tell him.  But I'm beginning to wonder if I'm capable of doing so.  When we talked about it, I really thought I was.  I thought I had a good handle on when things were starting to be too much.  After all, I was barely taking anything anymore.

Luckily, things have gone relatively well so far.  But with everything going on right now, I'm having a hard time evaluating my current situation.  I don't want to go back to the hospital.  I don't want to be on dozens of medications.  I don't want to have my name listed for 3p on Wednesdays indefinitely in any doctors planner.

But is that what I need?  And if I really needed it, how could I have made it so long without it?  Now granted, it's pretty likely I've only been able to survive because I really limit my social interactions.  Aside from Google+, the only time I talk to anyone is a few hours on Fridays.  But even that's overwhelming by the end of the night. 

I don't think I would have as much of a problem going to a psychiatrist if I could find one that wasn't an asshole.  I've been to several in town and I've only found one that I liked.  She was AMAZING.  Unfortunately, after only seeing her for a few months, she had to take permanent medical leave.  So I got shifted around a few times because I couldn't find a good fit with any of the other doctors, and eventually just stopped going.

Perhaps it's time to start the search again...

Wednesday, June 26, 2013

Food Log

Since using My Fitness Pal to log my food (vs. on paper as I had been) it's come to my attention that I eat far less than I thought I did.  Before using MFP, I would keep track of everything, but I would always round up/down on calories.  So if I had something that was 75 calories, I would call it 100.  Same with things that were close to multiple's of 50.  If something was 170 calories, I would call it 150.  I always figured things evened out with the rounding and it didn't make that much difference.  But holy shit, it really does.

When I started using MFP, I thought it was weird that I only ate like 600 calories that day.  I didn't think too much of it and thought it was just an off day because of everything that has been going on.  The next day my total was, again, around 600.  What the fuck?  I know my eating habits hadn't changed THAT much.  So I went back to some older logs I had where I had calculated them to be between 1200-1500.  I added in a few days, just to make sure it was consistent, and they all added up to be around 700-1,000.

So  now I really need to pay attention to what I'm eating.  Since becoming aware of this, I've been really trying to eat more, but I'm just not hungry enough it seems.  I mean, I'm seriously trying to get enough calories without just eating nutritionally void junk, but I'm having a really hard time.  I started drinking milk twice a day, which I really don't like, but it's an easy 200 calories. 

I'm really hoping that since I've been eating so little, once I start eating a sufficient amount of food my body will stop being completely inept and I'll finally be able to start losing weight a little easier.  I've also decided to start eating gluten free again.  I'll explain why in another post.  But hopefully doing that will also help me get more of the nutrients that I need and will help with all these chronic vitamin deficiencies I've been dealing with.

I see my dietitian again tomorrow, so I'm hoping to get some more advice from her.  I know I need to eat more veggies.  I haven't been eating many veggies the last week or so.  That's my goal for this next week, more fruits and veggies.  And salt.  I hate salt, but I'm definitely not getting enough.  I've been passing out more and I know it's because I'm not getting enough salt.  Maybe I'll add a serving of nuts or something to my snacks. 

Monday, June 24, 2013

Pregnancy in Pill Form

Today has been rough.  Ignoring the seriously intense physical pain I'm in currently because of my hip/leg from falling yesterday, it's been rough mentally.  Since being off my meds I've had my ups and downs, but for some reason while I was pregnant a lot of my hallucinations weren't really there.  My moods were much more stable.  My anxiety, while I still had a few panic attacks, was no where near as frequent.  I didn't even have as many seizures as I used to.  But now, I feel it all flooding back.  It must have been the hormonal changes keeping my insanity at bay, and since my body is getting back to normal my crazy bits are coming back, too.

I don't want to have to go back on any meds. At least not psych meds.  I'll probably go back on my heart meds, because seriously, falling hurts!  But I like feeling like I can handle my life without chemical intervention.  I don't like NEEDING to take a pill to be safe.

Not much else to say right now, but I'll likely be writing more on the subject in the future.  I'd really like to know what it is about pregnancy that makes my schizophrenia symptoms more manageable than any medication I've ever taken.

Sunday, June 23, 2013

Weight Loss

With all my ups and downs in the weight department lately, I figured it was time for another down.  Nothing too extreme like before, but I'd like to stay under 150lbs if at all possible.

I noticed last year that once I hit about 145-150 my pain increases considerably.  So I know it's not all girly to openly talk about ones weight, but fuck that.  I've never been a 'proper' lady and I'm not about to pretend now.

As an adult I've weighed anywhere from 89lbs to 235lbs.  Obviously neither are healthy.  Not to try and make excuses, but I was holding steady at around 130-150 for a little over a year when things started going awry.

Summer of 2012 I had a lot of issues and bad reactions to some meds I was taking.  I was in and out of the hospital for a few months.  Med change after med change left me feeling everything possible, but mostly just crazy.  Finally, at the end of August, we found one that actually worked.  It was by no means a long-term solution, but I was hoping it would be enough to get me through an obviously unstable point in time.  So I was put on Saphris to try and control the hallucinations.  It was amazing.  It worked great...

At first, anyways.  After about a month I was up to the max dosage, but it was helping more than anything else had, so I kept taking it.  I noticed the scales tipping up, but the med was working and it's hard to know when to say enough is enough and that gaining that much weight isn't worth it.

Well, when I went to the doctor in January and I saw the numbers on the scale go up past 200, I started to wonder.  But then it kept going, 210, 220, 230, 235!  It finally stopped on 235 and all I could think was "holy fuck, what have I done!"

During this time my eating habits had not really changed.  I have always eaten a strict diet of 1,200-1,500 calories a day and exercised for at least 45 minutes a day 5x/week.  None of this changed, and yet I gained close to 100 lbs! 

So that day I decided that I was done with medication.  All of it.  I even stopped taking my heart meds.  A rough decision at the time, but I'm managing.  Though I did start taking my aspirin again because of the heat.

So I stopped taking all my meds middle of January or so and didn't change anything else for about 45 days.  I needed to see how screwed up things had gotten to determine what I needed to do.  Well, in that 45 days I lost maybe 5 lbs.  But it was something, so I'm definitely not complaining!

Since we were planning to move middle/end of March, I wasn't too gung-ho about starting a new routine only to have to change it again.  So I just kind of rode out the rest of the time.

Chaos ensued, and now I'm here.  Time to start a serious weight loss routine!  I started using My Fitness Pal, and it's helping.  It's made me realize I don't eat nearly as much as I thought I did.  So I definitely need to start eating more to keep from storing everything.

When I weighed in today I was 204 lbs.  Step one of my goal is going to be quite modest, but I'd like to be consistently under 200 lbs by my birthday, July 18.

Depending on how that goes, I'll then set out a plan to figure out what I need to do to get where I want to be.  Of course, I will have the help of one of the best RD's I've ever had the privilege to work with!  So she will make sure I'm staying on track and doing everything in a healthy way without going overboard, as I tend to do.  However, if I can manage to lose exactly 2 lbs every week, I should be able to reach my goal of 150 lbs by the new year!!!
Created by MyFitnessPal - Free Weight Loss Tools

Waste of a day

Since moving in to our new apartment at the end of March, we hadn't really done much to make it 'home.'  Because I got pregnant only a couple weeks after moving in, we didn't see much of a point in hanging things on the walls and making the place really ours since we were going to have to move to a bigger place in a just a few months.

But with everything that happened this week, I decided a good way to get my mind off things and help me move on would be to finally finish unpacking and get things put where they belong!

Next to my computer desk there is/was a coffee table piled with things that hadn't been unpacked yet.  So this morning I decided it was time to get that taken care of.

There were some things that I decided we needed a shelf or something for, so I convinced my husband to go drive around and look for rummage sales.  We found a few, but didn't get much.  We got a good overhead light for our bedroom ($0.50) and I got another yoga ball ($0.50).  So I think we made out alright, even if we didn't get anything we were looking for.

But when we got home I wanted to pump up the new ball to make sure there weren't any holes in it.  So I got a chair and climbed up so I could reach the pump that is kept at the top of our coat closet.  But with me and all my awesome balance issues, I fell off the chair and ended up rolling my ankle, pulling a muscle in my knee, and royally screwing up my hip.

So off to the ER we went.  What a way to spend a Sunday.  It was crap.  I was in so much pain.  I don't know why I even bother going to the ER here anymore, honestly.  Before we even left, I told my husband it's not broken and it's not dislocated.  When I fell, I subluxed the joint and something got pinched or something  and it would heal eventually.  But I was in so much pain I couldn't figure out what else to do.  So we went.  I did get pain medicine via IV, so I was at least able to breathe again. 

The first thing I told her when she walked in the room was that it wasn't broken and it wasn't dislocated.  I explained to her my subluxation issues and how I fell/landed.  Okay, great.  She seemed to actually listen and she stepped out to go do something.  I thought for sure she would order an MRI or something to look at the soft tissue.  But no.  She took a regular x-ray.  Awesome.  Thanks for wasting my time trying.  But guess what was wrong with my hip?  It wasn't broke and it wasn't dislocated.  REALLY!?!??!?  So she told me to follow up with my sports medicine doctor in the next few days and take some shitty muscle relaxers at the lowest possible dose because because I hadn't taken that one in several years even though when I did take it it was useless and didn't help at all. But I'm sure you're right, giving me a smaller dose will definitely work this time.  *eye roll*

What a waste of time!  I hate our hospital.  I hate it so much.  I've never had an even half-way decent experience there.  Every single one has been bad.  I honestly don't know what makes me think that maybe 'this time' will be different.

But as dumb as it is, and as pointless as all of it is, at least the majority of the staff are really nice and helpful.  So it's not an all around terrible experience, just pointless.

So now I'm up all night trying to get things done that I had planned on getting done during the day.  But this time I'm trying really hard not to fall!


So, late April I took a home pregnancy test and it was positive.  We were SO happy.  However, because of my history of failed pregnancies, we were pretty hesitant to share the news or even let ourselves get too excited.
I had an appointment at 8 weeks, and we got to see the little bean on the ultrasound and hear the heartbeat.  We were so happy.  It was finally happening!  We were still a little hesitant, since I had had 3 losses between 8 and 9 weeks, but it was healthy with a nice strong heartbeat!

At 9 1/2 weeks, I had another appointment and got to hear the heartbeat on the doppler.  It was so amazing and such a huge relief that everything was fine.  We had finally made it past that milestone where most of my losses had happened and the heartbeat was so strong!  We finally really started getting excited and began feeling a little more comfortable telling family and a few really close friends.

My next appointment was at just past 11 weeks.  It was just a boring check up, so I wasn't too worried when my husband wasn't able to get off work since I would have another appointment the next week.  I was so excited to hear the heartbeat again!  I went back to the exam room and the nurse couldn't find it.  But I didn't think too much of it, I didn't have much faith in her anyway.  Then she took my blood pressure and it was back down to where it was before I got pregnant.  I started to think of all the what-if's, but I stopped myself.  It could have been a million things.  After all, my heart does weird things.

So the doctor came in and tried to find the heartbeat with the doppler, as well.  Still no luck.  But that's okay, that means I get to see my little baby on the ultrasound!  I was trying so hard to not let myself freak out until I had confirmation of anything.  So we go back only to have the worst news.  Not only was there no heartbeat, but the spinal cord developed in a sac outside the body and there was a very thick layer of fluid under the skin.

The baby had been measuring 5-7 days small, likely because I'm short, and at that appointment he was measuring 10 weeks 2 days.  Add 5-7 days and that puts him right on target for my 11 weeks 1 day mark.  The doctor said he's almost certain the heartbeat and development stopped within the last 1-3 days.  I was devastated. I felt horrible for letting myself get excited after the 9wk appointment like that was really all that significant. 

I had been through natural miscarriages and they're so painful, I did not want to do that again.  So when he offered to squeeze me in for a D&C later that afternoon, I jumped at the chance.  By the time everything was scheduled and explained and whatnot, I left his office around 12:30p on 20/06/13.  I had to be back at the hospital between 1:15p-1:30p that same day for the surgery.

It went really smoothly.  I had no pain or discomfort after. 

The whole situation sucks.  I finally let myself think it was really going to happen only to be wrong.  But my doctor sent the tissue off for genetic testing to make sure it's not something that's just going to keep happening.  Hopefully it's just a fluke.  I'll get the test results back in about 4 weeks.  So finger's crossed.  But at least I found an amazing new doctor.