Friday, August 30, 2013

Rest of the Week


Wednesday was my first day of Practicum. I'm in a middle school (and sort of elementary school), doing school social work. For second year clinical students, we have to do 24 hours of supervised Practicum per week for 30 weeks (720 hours total). I'll be doing group therapy with emotionally disturbed kids, those whose mental health impairs all ability to perform academically, and will do individual counseling with students who have SW on their IEP (that's my understanding anyway).

I was only there for 3 hours on Wednesday. And all I did was talk to my supervisor and go on a brief tour of the school. As soon as I got home, I went to bed. I woke up for 20 minutes, ate, and went back to sleep. I essentially slept from 5pm-6am. Then, I had to get up to go to class.


Thursday is when I have all of my classes, 8am-6pm. Three classes, with about 90 minute break for lunch. Each class is about 2 hours and 40 minutes. I was super concerned about how I was going to do, because I hadn't gone that long since this thing happened. Ever. Especially having to concentrate and such. I was really slow and not engaging my first class. But hey, it was at 8am, so what's new. I got to rest a little bit at lunchtime, and then did better as the day went on. I wasn't great, I wasn't the regular "Ashley" in class. Luckily, one of my teachers, who is at the end of the day--I had him last year, all year long, so he definitely knows me. But my other two are new to me. And there are so many new people this year, so I'm all super bummed that the only "Ashley" these people know is the post concussion Ashley. 

But, after unloading and talking a little bit with that last teacher of the day, I was feeling better. That, and he let us out of class after only 1 1/2 hours, so it was super early. I was getting tired again, but my friends were being super, super nice and supportive. And I hadn't seen them in awhile, and one in particular, who lived near me. So we went out to dinner. At first, I was like..look, I'm not fun to be around, let's not. But she's super nice and said, "I've been having fun with you all day!" Towards the end of the meal, I got a lot better. She noticed a dramatic shift and said, "There's Ashley! She's coming back!" So that made me feel a little better. She still didn't trust my driving and my friends made a safety plan for me as far as driving and such and potential game plans that I could do and not over extend myself. 

As soon as I got home, which was around 6, the time I would have gotten home anyway, I went straight to bed. (I showered first, then went to bed). I slept, again, all the way through the night, until Friday morning. 

My speech was a little fumbly, especially as the day it went on, it got worse. 

So both Wednesday and Thursday night, I slept for like 12-13 hours. 


I had to be at school at 7:30am. I did great today. My speech was on par, I was coherent, I was present, I remembered things (like my new funky password!), I walked, I engaged. Today was awesome. Maybe it's because I got so much sleep the last few days. Maybe it's because the medicine is starting to get into full swing (the new one is supposed to help with concentration and mobility, basically, and it's decent dosage). 

At school, my first full day, was also great because of casual Friday. I always do better when I'm dressed in jeans and a t-shirt. Preferably, soccer shorts and a shirt, but whatever, I'll take what I can get. But for reals. There were 48032984 meetings we had to go and some were impromptu and some were scheduled and some of the scheduled ones we couldn't make because of the impromptu meetings. We were all over the place. It was great, I loved it. I didn't understand what was happening most of the time, but I loved it. 

I got home and chatted with my roommate. And then I was in much need of a nap. I dozed for like an hour, and then felt rejuvenated. The rooms and I tried to decide what we want to do...and decide to hit up bingo night because the website says it's free. We call to get the deets, but the dude wasn't super helpful.

So we go and we're all excited...and we caused shenanigans within the first 20 seconds. We escorted ourselves out within the first 5 minutes and decided to not go there ever again. We accidentally stole someone's ink thing to mark bingo, someone's seat, and we had an old lady scold us and an old man. Then, it was explained that it costs money to play bingo. And it costs more money for a marker. Why can't I just use pennies? Okay, maybe it's like $5. No, a card and marker costs $19. But, that particular lady, and other people around, had like 7 bingo cards. What the filth. Anyways, we left. 

And decided to see Monster's University. So good. So inspirational! And then watched a TV episode. 

So, I've gone all day, been awake since 6:30am, working and out and about since 7:30am with the exception of my hour nap, and it's almost midnight. And I did super well all day. I'm tired now and ready for bed, but still. I made it two whole days in a row. And I had one perfect day--I went one whole day without too many symptoms. 

Now I have the whole weekend to rest. And it's a 3 day weekend. Things are hopefully looking up. Long, not so great, very symptomatic week. But today was pretty good. 

Week Long Updates

This may sound strange, but I completely forgot about this blog. I completely forgot about a lot of things, actually. Maybe not so strange, since,  you know, I do have mTBI (apparently, the preferred name for what happened--mild traumatic brain injury).


So, Monday, I went to the concussion clinic. First, I got super lost and went to two places before I ended up in the right area and parked on the complete opposite end of the place. I had forgotten my directions and all the instructions. I ended up wicked late to the appointment, instead of wicked early, as planned.

The special doc did some balance testing...she asked if I could do it without blinking my eyes so much. I told her I didn't realize I was. She asked me to do other things. And then I got dizzy and had to sit. But not super dizzy, so I asked if I passed. She, not really.

Then, I had to do a special computer IMPACT test that is specifically designed to test one's memory, concentration, recall, recognition, spatial ability, vocabulary ability, reaction time, and some other things. It also has a way to test my reliability with the test. Before I took it, I had to rate all of my symptoms, based on severity. Directly after the test, I had to rate them again. Anyways, I did that and when the scores were printed, I asked the administrator if I passed. She, well, there were..some low scores..but you know what, the doctor will discuss it with you.

My head pounded, dizziness started, and super light sensitive (which hadn't been an issue) and my emotions were..a little higher.. after the test. I sat for 40 minutes waiting for the doctor, where I closed my eyes and blocked all the light out and probably cried a little bit and tried to rest.

The special doctor comes in and we talk a little bit. She tells me overall, I didn't do too bad. My words/vocabulary was really good without the distractors, but with distractors, a little low. My design memory wasn't great (spatial) and symbol match and total memory (recall, not recognition) was awful (but really, does that surprise anyone? I've never had a good memory..) My color matching was completely accurate, but a bit slow and the three letters test I was really slow. (You can google the test, it goes over the entire thing, so you can actually know what I'm talking about, and I have my exact results if you want them.)

Then it has all my composite scores listed. And then calculates my cognitive efficiency index. Mine is 0.32. That measures between accuracy and reaction time. The range is approximately 0 to .70, with a mean of .34. So I was just slightly below the mean.

So, not awful, but not wonderful.

The doctor kind of said...not so sure about school. I told her the same thing I told my PCP. If it's not going to kill me, I'm doing it. So she said okay on a few conditions:

1. I don't work, at least for the first few weeks.
2. I get a medical parking permit from school (I have to park close to campus buildings for the next 5 weeks, because I can't/not supposed to walk that much.)
3. I follow up with her in 2 weeks
4. I do as little as possible, just school, and that is absolutely it.
5. I understand that I won't do as well in school.
6. I start taking another medicine, in addition to the one my PCP prescribed.
7. I potentially go see a speech pathologist.

So here's what's actually happening.
1. I'm not giving my new job her note. I already lost one job because of this, not going to lose another.
2. I do have a medical permit now. I feel weird with it. It's not a handicap or disability, it's a different kind.
3. The appointment interferes with my practicum........
4. Well...not happening...
5. I've almost come to terms with that, but um, not really.
6. It actually has also helped.
7. They were supposed to call me and still haven't.

So that was my Monday appointment, in detail. The doctors want me to stop my life, and I get it, and I understand, but I can't do it. It's not feasible. We need to come up with a legitimate, feasible, and doable game plan. The doctor said I'll definitely have 100% recovery, but the more I do, the longer it will prolong my symptoms. Again, I get it. But I can't not do things. I can't not work. I can't not do well. I can't not engage with people. I can't not keep going to all these appointments.

She said, it's likely that with my current potential schedule, my symptoms will last all semester, because I'm doing too much. 

So I'm trying. I really am. I'll post the rest of the week in another one, because this got wicked long. 

Friday, August 23, 2013

Oye to the Poodles Already

Quick 35 second clip of one of my all time favorite shows, Gilmore Girls.

Today, my speech super regressed. And I started drinking a lot of water again and going to the bathroom a lot. I didn't connect the dots, but as I've mentioned, I have a super awesome and smart doctor.

I had to get my TB test read today, so when I was in the doctor's office, my speech was how it was like the second week. Slow, skipping words, slurred, you know..
So they could finally actually hear what I was talking about, because every time I've been there, I've been "pretty normal". So the nurse was all worried and then the doc called me and said if I continue to not do well, particularly if I urinate like double (like I was), then I have to go to the ER this weekend.

She said, "Hopefully, we can make it through this weekend". She's thinking it may be connected and I might actually have DI, and so when I get "dehydrated" (in quotes because I drink soooo much water), it may affect my speech. I said, "But you tested me, and I didn't have it" and she said, "It wasn't the actual test" and she explained the actual test, which sounds super, super awful (water deprivation test) and that it's my electrolytes I have to get tested and such.

I have no intention of going back to the ER and have less than zero desire to, especially after my last incident there.

Anyways, so now, I'm just going to start drinking a ton of gatorade again to replenish the electrolytes, stay in the AC, keep track of water and bathroom and speech and gatorade intake again, and rest.

The nurse (who is also super awesome) gave me the emergency doctor number. The pharmacist gave me their emergency number, just in case. And then the doctor said I may have to go to the ER. This is getting ridiculous. Three different health professionals, all giving me special numbers.

My roommates both left for the weekend, so I'm all by myself this weekend..I will try to be very careful and track everything.

So anyways, I just took like a 45 minute nap, been drinking gatorade, and now feeling better.

Also, good news: I double checked with the nurse and doctor, and the medicine I'm on is just temporary, just to help me through this recovery process. So I feel much more calm, knowing that it's a short term medicine, even though it's normally for long term things. And that it's on the lowest possible dosage (10mg/1x day--and the normal dosage for adults is 25mg 3-4x/day) also makes me feel a lot better.

Thursday, August 22, 2013


Some people are texting me, messaging me, asking me how I'm doing. And when I'm real and say, not so good. No one knows what to say.

I'm struggling.
I just want to be better. I want to be normal again. I want to be Ashley again. I want to engage with people again. I want to love life again. I want to read all the time again. I want to excel in what I do again. I want to make jokes again. I want to laugh again. I want to be fun again. I want to be outside again. I want to be easy going again. I want to be how I was on July 23. The day before all of this.

I realized that medicine scares me. I used to be such a huge proponent of medicine, but now that I have some, I'm scared. I'm sure it'll be good and helpful, hope so anyway. But what it actually is for scares the hell out of me.

What the doctor actually said, that I didn't write, scares the hell out of me. What it is actually going on is the most frightening thing I think I've ever encountered and I don't know what to do.

All I did was hit my head. No brain bleeding, no brain swelling, no permanent brain injury. So why are my symptoms so horrible. Why are they not going away. Why am I not recovering at the rate I should be. 

Wednesday, August 21, 2013

More Doctor Appointments

First, I looked up the word "disgruntled" and I realized that's exactly what I am.
Second, I was in my irritated stage when I wrote about the exit interview.

Anyways. Today, I went to my follow up doctor appointment.

Before doctor appointment, my friend came over and brought ice cream, lunch, and coloring books. That made me feel 4830x better.

Basically, doctor was super impressed with my organizational skills, not so impressed with my recovery.

I have constant fatigue, sometimes insomnia, sometimes I sleep all the time, constant headaches, irritability, withdrawn and not wanting to socialize, and have difficulty concentrating.

She thought maybe I should do cognitive therapy. She called the neurologist and they talked and decided to do two things.

1. I have to go to a concussion clinic next week. There, they're going to do all kinds of tests, educate me more about concussions, check my reaction time, balance, impact/computer test, etc. From there, they'll come up with a potential plan of action, if need be.

2. I now have a prescribed medicine. It's supposed to help with some of my symptoms.

I asked the doctor about school.
She said:
1. It definitely won't cause permanent damage.
2. I probably won't excel anywhere near the rate I was (until I'm fully recovered).
3. It will be extremely difficult, may delay recovery, and concussion will strongly affect school.
4. There is nothing the teachers can do as far as any accommodations to help me.
5. She's unsure if I'll actually be able to do it, given that at work, they would send me home after 3 hours.

Monday, August 19, 2013

Exit Interview

I had my exit interview today from the CMHC, which is just weird according to my mom and aunt since I was involuntarily terminated.
For those who don't know, my aunt is HR manager of a mega church (18,000 members, approximately 9,000 attendees any given service) and my mom is Senior Director of HR at a major health network (5,000 employees), so I go to them for HR advice and questions, they're pretty good at their jobs.

I turned in my phone, charger, keys, and fob. The HR manager hands me the paper to do the exit interview--doesn't go over it with me, doesn't ask me the questions, doesn't dialogue with me about it.
I fill it out, I'm pretty honest, and then when I'm done, HR just says, "Okay, thanks". So I made them dialogue with me.

I explained that while I understood from an employer perspective, I no longer meet their minimum requirements and don't necessarily argue the fact I'm being terminated (I'm a little pissed, don't get me wrong, but I do understand it). However, I didn't think it was handled well. No one asked me how I was, no one checked in, I wasn't given a time frame, I wasn't told that if I wasn't fully released within a specific time frame I would be terminated, I wasn't told which specific reason I needed to be released on (she told me it was the driving), all I was told was that I had to be fully released in order to return and when I turned in my note saying I wasn't fully released, the first words were that I'm being terminated.

This is the part that actually almost sent me over the edge. 
The HR manager, who was very kind, said, "That's very surprising to hear that, because I met with the director and supervisor, asking about progress, checking in, following up, and all we got in response was a doctor note." She had put on "that face" and had "that tone"--you know the one. I have it all the time when I know someone is lying (especially when I was an RA) my mom has it all the time when she knew I was lying when I was little or her "HR face". That one.

But I wasn't lying. And I got really mad. I think I did actually manage to keep my cool, but I also explained, no, actually. I would go straight from the doctor to work to turn in my notes. I am responsible. The very first week, July 26, when it first happened, when I couldn't communicate, my uncle called my supervisor for me. Otherwise, I never heard anything. The only other time I heard anything was when I was partially released, and I got a VM saying I could only come back if I was fully released. Again, no time frame, not saying I would be terminated if I weren't released soon, not asking how I was. I said I called back, we played phone tag, and she left me another VM saying same thing.

The next week, I turned in my note, I caught my supervisor. And first thing she said was that I was being terminated.

I said I have the messages, my phone records, if you want to see how many times I was called. I offered to play the VM, even. I only have two phone calls, two VM, not until the third week, just saying I need to be fully released.

So now it's just a he said/she said and I'll probably just be seen as a "disgruntled employee" and they're the shining supervisor who apparently checked in, communicated with me, explained everything, and all I did was give them a doctor note and didn't respond. I'm so mad.

I'm not a disgruntled anything. I'm not disgruntled. That's not a word people use to describe me. More recently, maybe irritable, but I'm still Ashley, for the most part. I'm not mean. I don't fight people, I don't tear people down, I don't act irresponsibly,  I don't lie, I don't demean people, I don't 'fight fire with fire'.

But they don't know me. They don't know that. All they saw was what was reported, not in writing I presume, from my supervisor. And what was reported was different than what I experienced.

I am almost okay with the whole being fired thing, because I didn't do anything wrong. I understand the reason for the termination, and that's something I have to deal with. But I am definitely not okay with being made to look like I'm in the wrong or like I lied or anything like that. Because I'm not and I didn't. 

Also, my speech is regressing today. I started to be unable to use contractions, start to get a little slow and deliberate, and it was like back to the second week. But sometimes it is better. Maybe it's just when I'm stressed/mad it goes back?

On the good side, while school said if I can't actually fully meet the requirements, I should withdraw or do PT, they were very kind and very helpful. My new practicum instructor said she is more than willing to work with me and my new job said they were too. They were all very kind in their responses. 

Sunday, August 18, 2013

"Do Not Tell Me 'It Can't Be Done'"

Pearl Harbor is one of my favorite movies. Arguably, this is one of the most moving scenes. School has suggested I don't do FT--I either withdraw for this semester or do PT. I will be asking my doctor what will happen if I do FT school, even if I'm  not actually ready.

It's a lot easier for people to say pushing school off isn't a big deal when it's not them. I didn't just give up everything and move halfway across the country because I only kind of care about school. School has always and will always be my priority. More than work, more than my health, and more often than I care to admit, more than my relationships. Is it wrong? Probably. But school comes first.

My friend asked "Is it worse to delay your degree or to delay your recovery?"
My degree.
She was a little mad.

I've basically been resting/sleeping from 5pm Friday until now. (So the past 48 hours..)
I'm about to go back to sleep.
Still have massive headaches.
Still super irritable. And now really frustrated.
Less anxious, as I was in the first two weeks.
Still can't concentrate.
I either sleep all the time or can't sleep at all.
But I'm always tired.

I have to meet with HR on Monday. My doctor on Wednesday.

If the doctor says it will be difficult to do school FT, I'll do it. If the doctor says I may cause permanent damage if I over stimulate the brain too quickly, I may consider my options. If the doctor says it'll just delay my recovery, but I'll still eventually be fine and it'll just be really difficult, I'll do it FT.

I only have one more freaking year of school. That's all. I just want to finish. 

Thursday, August 15, 2013

Neurology Appointment

Today was a much better day than the past two days. I woke up and got to work and felt pretty decent overall. They didn't let me do anything, but holla to the CM who willingly did my job and laughed and talked with me (Cindy, that's your shout out!). Anyways, went to my neurology appointment.

Here's what happened.

First, he had me tell my whole store, starting from day one. By now, my story isn't nearly as detailed as what it used to be, so it didn't take as long. Which is good, because I'm really tired of the story. We looked at my MRI and he was very nice and explained everything to me, let me look at the MRI and the pictures of my brain and pointed out what was what.

When he tested my reflexes, I told him the first time, a few weeks back, they weren't strong, and he explained what that meant. And when he had me touch my finger to my nose, I told him the first few times I struggled, and he said "I  bet you couldn't really do it". I said no, I couldn't gauge where the finger was or where my nose was and I couldn't control my strength and slammed my finger on the side of my nose and it hurt! I loved that he guessed that and he understood.

He said it looks like there is slight heterogeneity with my pituitary gland, which is probably why I'm showing slight DI symptoms. Basically, my P-gland (which is responsible for all kinds of hormones being released into the body, such as telling your body when you need to pee) is bruised and it should heal, but it'll take time, that's why I'm drinking and peeing so much. But both have gone down! I'm down to about 96oz of water a day and bathroom averaging 5 times a day.

He said nothing is major and I should fully recover. Hallelujah, oh my geeze, that was the best news I had heard in almost my entire life.

Also, the neurologist said that it seemed like I was severely dehydrated and had a severe concussion. "You had a double whammy of severeness, that's why it's taking awhile, you really have had a traumatic injury" (actually, triple, with my broken nose, causing sinuses to kind of act up too). This explained why I passed out (which is what I was trying to tell the doctors in the first place and they kept saying I was really hydrated, but I'm going with the neurologist on this one. And it also explained why my symptoms were so much worse than an average person, even though I didn't have any brain bleeding or swelling.

He also said it was absurd and ridiculous that a doctor had even thought mental illness or drugs could have been involved, which eased me even more.

He did say though that I really have got to seriously slow down, even more so, and if I don't, school may actually be pushed back. So, my plan is going to work tomorrow morning, say bye, and then next week do as close to nothing as possible. I WANT TO BE BETTER BY SCHOOL, AUGUST 26.
As of now, that might not happen. But it's going to.

He gave the example of when driving stick shift and the car is neutral, you just have to let it coast. Otherwise, if you hit the gas, all it does is spin the wheels. He said, "Right now, your wheels are still spinning. You're slowing them down, but they aren't stopped yet. They have to stop for awhile and just coast".

At work, my supervisor and coworker sat with me and suggested I actually process this with someone. They made the point that, I am about to start my last year of graduate school and having to go into with it with a traumatic injury. And they said with everything else you have going on and all the stresses, make sure you're talking it out and really processing. They kind of called me out...again.

So basics:
-I have slight DI, but it should go away.
-I will recover fully.
-Nothing is super major or permanent.
-I have to slow down even more and may not be ready for really engaging in FT school and such.
-I had a really traumatic concussion.
-I should process.

Doc also confirmed that irritability is a strong sign of concussion and it should go away and that my fatigue will be the last symptom to go away. I asked him if he had any kind of timeline, and he said no. Which I expected. I told him his field needs to get on that and he laughed.

Also, it turns out his wife got her MSW from KU. That was cool to hear, so he better understood my courses and what challenges I was facing. 

Wednesday, August 14, 2013


To put in basic terms, that's what happened today. I got fired from my weekend job at the community mental health center because I am unable to perform the necessary duties.

I woke up today and didn't feel much better from yesterday. My full time job (which ends this week anyway because I have to go back to school) told me I couldn't come in today, unless I was actually better.

So I had to go to the hospital to pick up my radiology images for my neurology appointment tomorrow, and figured since I knew I wouldn't be better by this weekend and CMHC is right by the hospital, I would just give them my new doctor note. At first I was waiting, because the doctor said if I got better this week, she would re evaluate me and may release me for the weekend. But I knew I wouldn't be better by then, and I had to give them the note sometime.

My supervisor was walking out of her office and didn't acknowledge me. I said Hi, I wanted to give you the doctor note and explained that the doctor was not willing to release me for full time yet and I still couldn't really drive.

She said, "Well, we will have to discontinue your employment. This has been too hard on the team to get people to cover." Then she said, "You must have really hurt yourself" to which I almost had a snotty reply, but I refrained and just said, "Yes, I will be seeing a neurologist tomorrow". She said, "Okay, well we'll have to get something in writing, but we can't have you employed here anymore. I hate to lose you, you have been good staff, and maybe you can come back." I just nodded and walked out.

And did my best to hold back the tears. The started coming though. And as soon as I got to my room, they were uncontrollable for a long while. I called my mom and she tried to calm me down. And then I kept crying.

I have never been fired or let go or whatever word you want to use. It wasn't due to performance issues, and yes, I know they said I may be able to come back, and yes, I know she said I was good at my job.

I know I was good at my job. I was really good at my job. I know that. This injury has taken away so much though. My freedom, my independence, my drive, my jobs, my health, my abilities, my work ethic, my kindness, my compassion. And we don't know what's wrong. I just get irritable and grumpy and tired and frustrated and I'm not better and I'm mad. And I'm getting worried and scared now.

I'm the most frustrated about two things.
1. She didn't really seem to care about my injury, she didn't really ask about it, and the first thing she said was that my employment was to be discontinued. No one on that team has ever texted me, called me, asked about me. They don't care.

2. I let the team down. I knew they never cared about me, that's been my rub with this job since day one, but I still care about whether I perform well or not. She told me I let them down. That it's too hard on them. Which I get and I understand. But feeling like I've let someone down is literally one of the worst feelings.

If you're going to comment on this, don't say anything that you think is helpful, because it probably won't be. 

Tuesday, August 13, 2013


Today has not been a good day. I was incredibly irritable. I started getting very tired, very quickly, and my speech slowly regressed again. Slurred a little bit, skipped a few words. I think I just very tired again.

Last night I slept for long time, 12 hours. I woke up for water. I went to work for three hours and did not do well. I went home and took nap.

My supervisor does not think I'm well enough and doesn't want me to come in for rest of week. I just want to finish this week. It is supposed to be last week.

 Why am I not okay and all better. 

Monday, August 12, 2013

Week 4

I called the doctor this morning, because my weekend job required me to be fully released, not just partial, and needed a new doctor note.

I talked to the doctor and we both kind of agreed that I still wasn't actually good enough to be fully released. This past week, I haven't gotten worse, but I'm not so sure I've actually's kind of like I have stabilized. Which would be fine, except I'm not good yet, so it kind of sucks...a lot. For people who don't know me, I seem normal, actually. I talk decently, I'm pretty with it, I'm just a little tired. For people who do actually know me, they know I'm usually pretty quick. I can respond to things when people say something, I'm generally on top of my game, and even if I'm tired, I don't generally seem beyond exhausted all the time.

The doctor wants me to see a neurologist, just to make sure we haven't missed anything. We're pretty sure that I will be okay, nothing is really wrong with me, and I'm just taking a long time to recover for whatever reason. She just wants to be sure.

The doctor's assistant made my appointment for me and got me all squared away. I really appreciate this doctor, I just feel like I've been in a pain in the butt patient.

Anyways, I'm still only partially released, still not okay to really drive too much. I went to work this afternoon, and will be working half days this week. I did okay at work, but now I'm really, really tired. 

Sunday, August 11, 2013


I'm finally starting to be able to read and watch TV! Right before this whole thing happened, I ordered some books...and I got them the day I fell. I haven't been able to read them and I have been super excited about them so I'm stoked that I'm able to start!

Book 1: I Thought It was Just Me (But It Isn't), Brené Brown
Basically, it's about shame. And as I've said several times, I'm not so great at actually talking about my shame. But this story was just great as far as right now. Also, today I learned I had a chance to see her speak, but didn't know it (story below)

Because I don't want to type all of it, this is a basic paraphrase (p. 74-76) and background:
Brené Brown (author) got super sick, and growing up that was an "unwanted reality". While her parents never shamed her for being sick and were empathetic towards others when they are, when they were sick, they were hard on themselves. 

"When they were sick, they toughed it out. They didn't slow down....I kept telling Steve, 'This can't be happening. I'm tough. I don't get sick.' Finally out of frustration, he lovingly held my face in his hands and said, 'Well, apparently you do get sick. And right now, you're not so tough. You're human like the rest of us. You really need to work through this--you're not going back to work for a couple of months. This is serious. You need to apply some of your own shame medicine right now.'"

"And as my experiences demonstrate, it doesn't have anything to do with what I say or how I treat others. I have to watch what I do and how I treat myself when I'm feeling sick. Being married to a compassionate physician helps. He often reminds me that 'being tough' is more about being lucky--that when illness strikes, toughness has nothing do with it. We're all vulnerable."

PS. Brené Brown spoke at the Willow Creek Summit, which is a GIANT global leadership summit, primarily for church leaders and such. Every church I've gone to talks about it, because it's giant and a big thing in church world. They broadcast it globally. One of the host churches is Church of the Resurrection, a mega church in KS, where my aunt works at and she invited me to go (it was this past Thursday and Friday), but that's when I was still feeling not super great, and I would feel guilty being there, and not at work. She didn't know the speakers, but today I was with her and she showed me her book and Brené Brown was there.  (

PPS. The whole TV thing..turns out I can, but then the next day I cannot use technology at all. And I have to take frequent breaks still. Sunday, I had to take 5 "naps" (don't sleep, just rest). So, I guess I got too excited too early.

Wednesday, August 7, 2013


That's how I feel. I feel selfish. That's been one of the worst parts about all of this.

One friend is about to start her last year of college.
Two friends are about to start their last semester of college.
Many friends are about to start their first year teaching.
Two friends are about to start student teaching.
One friend is getting ready to move across the country for an internship.
Four friends are pregnant.
One friend is getting married.
Two of my friends just got married.
One friend just had a baby.
Many friends are starting brand new jobs.

What kind of friend doesn't ask about all of those events and keep up with those friends? The worst kind. That's me.

I either don't have conversations with people, or when I do, it's about me and how I'm doing.
I hate talking about myself. I hate that I have to. I hate that I'm not okay. I hate that people feel obligated to ask about me. I hate that I don't have the energy to genuinely care about anything right now. I hate how tired I am, all the time. I hate how frustrated I am. I hate how selfish I feel. I hate how lazy I feel.

I hate when people tell me to enjoy this vacation. It's not a vacation. I hate when people tell me I'll be fine. I'm not fine right now. I hate when people ask me what happened. I don't know, I fell, it was stupid.

Two friends called and I wouldn't answer their calls. I told them all I would do is complain, maybe cry, and sound selfish. They were very kind. They told me I've always been there for them. They told me it's okay to do those things.

And I'm usually really good about being careful and using things like FB wisely. Today, I made a terrible mistake and posted something about this. Who does that? I hate doing that. I hate that I did that. As someone said earlier to me, it's like I lost my filter. I've never ever been close to "losing my filter". Ever.

I don't do things out of anger or frustration. I'm logical and rational. But it's too tiresome to be logical right now. And nothing is helping.

I want to be better. I want to work. I want to care. I want to engage. I want to ask about my friends. I want to have conversations. I want to catch up and learn about people. I want to have energy. I want to be a good friend. 

Main Point: I Still Can't Work

I went to work yesterday and worked a full day. I didn't really do much of anything. I basically sat there. The only real work I did was do my July audits, which normally takes about half hour, and it took me nearly all morning (like 4 hours). I had to do a few things with family, got home, and crashed by 8pm. I slept all the way through the night.

Except I did wake up for the giant storm (10in of rain in some places).

I went to work today and told them they were right, couldn't do full day, it wore me out even from doing nothing. Just being awake. They told me to go home right away. I said no. I gave them my plan. Work half day Wednesday, come into work an hour later and leave work an hour earlier (6 hours) Thursday, and don't work Friday. They said how about you leave at 10am today and don't come back until next week if I'm doing better. My boss said, "I don't want you to have to push back school by a semester" and I said there is no way I would ever do that. I will start school. I will do what I'm supposed to do. And I will graduate on time.

I would have fought more, but I knew they were right.
I came home by 11am and was asleep within seconds. I slept for about 5 hours.

Then I got a call from my weekend job. I have to be fully released before I go back there, so I can't work there this weekend either.

So I'm out of work for at least three weeks. I may be able to go back next week. I may have to meet with the doctor again sooner than I'd like. This is a lot of income I was expecting to have and save that I'm missing out on. I'm not a real employee so I don't have any benefits. So you calculate how much money you'd be losing if you didn't work for three works, maybe four. Seven days a week. And you see how much you like it. Because it sucks. And when school starts I can't work as much.

I'm not really improving. I was just hoping I was. Now I'm just mad. I have other words to use for my emotions, but do still have enough wisdom to not write them.

I also started my period, so my emotions are raging like no other.

But I did get flowers yesterday. From one of my married couple friends. They somehow figured out my aunt's address and sent them here. 

Monday, August 5, 2013

I'm Cleared (Sort Of)

I had my follow up appt today and I'm allowed to go back to work. Doc is a bit worried still, so I have to do half the work load and have to limit my computer screen time. I'm still not supposed to drive a lot, so doc wants me to stay in Olathe this week so my drive time is pretty minimal. (She didn't want me to drive at all, but we talked it out, and I just have to be super super super limited.) I drove about two blocks today and I was exhausted, took another nap and took some Tylenol.

I'm going to rest a bit more, get things ready, and then prepare for 45 minute drive...I have to get to Olathe somehow, so that's why. But hey, then I won't have to do that drive twice a day this week, and only twice this week.

Also, all my tests came back normal, as per usual, and so that still lives a lot of unanswered questions, and still don't know why I've been so thirty and drinking so much darn water.

If my thirst doesn't improve or my symptoms don't continue to improve, I have to go back to the doctor.
Otherwise, I still have to go back in a month to follow up again, because doc is still slightly concerned.

Hopefully next week I'll be totally normal?

My head throbs. I'm tired all the time. I'm bored of sleeping. Something is off, but every test is normal. I'm starting to get really frustrated.

Sunday, August 4, 2013

Finally Home

My mom left this morning--the fact that my mom was willing to go home proves that I'm doing better! My aunt said Saturday was the first day she say remarkable improvement and I truly did seem more like myself.

Saturday, my mom, aunt, and I went to get our nails done. I about fell asleep and as soon as we got home, I took a nap. I woke up and we got my grandpa, my mom and aunt's dad, and he joined us for dinner. I was able to watch 1 1/2 hours of TV (House Hunters)! I was about ready for bed same time as Grandpa--around 8! After we took him home, I pretty much got ready for bed and went for bed.

Sunday, my aunt, cousin, and I took my mom to the airport. It was super busy and super rainy. Stood with her to get her bags checked and as far as we could with security, and then said bye. Soon as I got home, I took a nap. Woke up, had lunch, chatted...took another nap.

And then my aunt drove my car back to my house, I straightened my room a little bit, and then took another nap. I got up, had dinner, talked to my new roommate...and now I'm about ready for bed again.

I'm averaging about 2 naps/day. Get tired every 4-5 hours when I'm at home, 2-3 hours when I leave the home. My max TV time is 1 1/2 hours and max computer time on mindless things (like FB) is about 40 minutes and max computer time on blogs, news articles,  reading anything I care about, is only about 20 minutes.

Tomorrow I have my follow up doctor's appointment.

Anyways, I'm finally home. I've been in another city for the last 1 1/2 weeks. Good to be home. (And good to have a roommate finally home!)

Friday, August 2, 2013


Today was a legitimately good day, though kind of a slow start. I slept until 10:30, so basically rested from 7pm on Wednesday until 10:30am Friday. In the morning I went out for a little less than three hours and that exhausted me. I started feeling asleep at lunch and took a three hour nap. After my nap, I was able to watch thirty minutes of TV--progress!

And then was able to do dinner and did pretty well. I had to rest again for another hour or so, but then I was better. And I was able to watch an hour of TV (Friends) and maybe about thirty minutes on the computer.

With the exception of when I get really tired, my speech is almost up to par today and my typing speed is getting back up there.

I still wear out after a few hours, but I was able to concentrate a little more and be out and about for a total of like 5 hours today.

Water intake and bathroom was much lower today too!
Water: 160oz and 32 oz of Gatorade (realized I probably need to replenish all of the electrolytes)
Bathroom: 7 times

Thursday, August 1, 2013

Daily Update

Today wasn't "as good" as yesterday. As far as my speech and mobility, pretty darn good. However, I rested pretty much all day. I wasn't "perky" or "upbeat" at all and had close to zero energy. My head hurt way more today than it has. I couldn't sleep at cousin thinks it's probably because I'm bored of sleeping, which is probably true. But I also still can't be on the computer for more than thirty minutes without getting worn out, can't watch TV, can't read, or anything. So that leaves me with just laying down, eyes closed, but not sleeping all day. Meaning, I get really bored but can't do anything. At all.

I only moved from the couch to eat, maybe a total of two hours all day. Last night as soon as we got home from the doctors, I rested for a few hours, pretty much crashed as soon as we got back, around 7pm. And then awake for an hour or so around 9, and then fell asleep until 8:30am. And then just laid in bed for another four hours, moved downstairs to the couch, and laid/slept/rested until now, and I'm about to go to bed.

I was able to play two card games--I won both. And that tired me out.

I'm also keeping track of my bathroom and water intake...
Today, I drank 256oz of water and went to the bathroom 13 times.
I wasn't exerting any energy, because I literally laid down all day.

I think it's just because I had two long days in a row and I'm just not able to keep up. I usually average being awake about 5 hours before getting really tired. The last few days, I had about 9 hour days, and I couldn't do it. And so I get tired, but not necessarily sleepy. And we're afraid for me to take any kind of sedative or Tylenol PM, so that leaves me with laying down, doing nothing, but drinking and peeing. Good grief.