I took a break.

Duh. It’s been over a year and a half since I’ve last talked to you. It felt like forever for me too.

Good news – I left the place where I worked. I should retitle this AWESOME news. I really hated it and it made me miserable. It changed who I was. If I would’ve even remotely liked my job, it would be different and I would still be there. I hated it with far more passion than I have ever loved research. And I LOVE research. To be honest, I liked the work. But it got to the point that I would ask my boss a question that I already knew the answer to just to see how far they would lie. (pretty far)

More good news – I stayed at home with my toddler and really spent some awesome time with him. He’s funny. He has a good sense of humor that I didn’t think was possible at 2 years old.

More more good news – I’m off all medication. I’m at a place now where I don’t need anti-depressants because I’m strong enough to handle what is happening in my life. I don’t have people lying to me (yet) and making me feel not good enough. I feel appreciated. I’ve also changed my diet to reduce intestinal distress which has eliminated seizures. (YEAH!!)

More more more good news – I’m writing my book(s). It feels so good to work at something that hopefully makes a difference in the world.

I’m hopeful. I hope you are too.

The tale of two cities

*It was the best of times*

I feel as though I am improving in the memory department. Partly because I am working on it with Lumosity.com and partly because I have reduced my concern and effort with my physical limitations. So..yay!

Andrew and I are getting so much closer. His personality is developing so rapidly and we enjoy watching him learn and grow. I try to compensate for my physical limitations and he cuts me some slack. It’s teamwork at its best. 😉 His favorite activity right now is holding on to fingers and zipping every where, usually at a dead run. He will sit on your lap acting all innocent and pat your hands, then he grabs your fingers and you are stuck. I think that I’m partly getting a little better with my own walking and coordination simply by walking with him around the house, but dang it is a back breaker!

Some of my confidence is returning and I’m holding my ground on some things that I would have let go before. I’ve kept my mouth shut on many things at work and some stuff got out of control. For instance, I had to block a coworker because she was using information on Facebook for work stuff. It was inappropriate and infuriating. I felt that if someone who I thought I had a good relationship with was going to treat me poorly, they didn’t deserve my friendship. It was a hard decision, but once I made it, I was swift and decisive. It felt pretty good to avoid that type of drama, especially since there was no way that I could feel comfortable with her in an informal setting.

*It was the worst of times*

Okay, that is totally dramatic, but it is the first line and the most famous line in that book, so I had to include it.

Not really the *worst* of times. I got all of my test results. The MRIs (4 of them – 1 MRI of the brain without contrast, one with contrast, and I forgot the other two – ha!) and all came out normal. The sleep deprivation EEG which was, well…it was not nice. I was put in a dark, warm room. Fell asleep for about 20 minutes, the technician wakes me up and tells me to stay awake for 2 minutes. This is after I stayed up for 27 hours. It was annoying and hard (the whole point of the test – to irritate the brain and record the reaction) and it came out all clear too. Finally, the 5 hour cognition testing with the neurological psychologist. I won’t bore you with the details of the tests, let’s just say that 5 hours is a really long time to continually test. Results? I am superior in a few areas (woo hoo!!), average in most areas (meh), and severely deficient in an area (dang). Overall, it is not representative of someone with my education. That was a punch in the gut. So, at least there is 1. improvement with Lumosity.com (I do not get paid to talk about it, I just think it is pretty awesome) and 2. there are workarounds such as more time and repetitions.

So, not the worst. There is a lot of hope here.

*On a separate note*

You have a sixth sense. We all do. A couple of examples: Bob can analyze anything. Anything anything. He is also compassionate and can separate his feelings for the person from their behavior. I really admire that. Also, my brother can detect bullshit from a mile away. He cuts through it and will call you on it. It’s really valuable if he is on your side. Otherwise, yikes. 🙂

My sixth sense was deep compassion for people and the ability to trust and connect with people quickly. I’ve lost that and I’m really sad about it. I hope that it is from the dulling effect of the antidepressants rather than brain damage. That way, if I can ever stop the antidepressants, it will come back.

So, as you can tell, my best of times REALLY bigger, more impressive, and overwhelms the worst of times by leagues. And leagues. And more leagues. All of the leagues! I’m stubborn and I will make it no matter what.


New neuro whatnot

Due to the massive memory problems, I got an urgent appointment with my neurologist. While decrease of memory is a side effect of the anti-seizure medication that I’m on, apparently my levels don’t reach therapeutic levels so that probably isn’t it.

You know what this means? If you said tests, tests, and more tests, you win a test!

I have a sleep deprivation EEG scheduled in which I have to stay up all night and show up at 8:30 utterly uncaffeinated. UNCAFFEINATED! Then they attach nodes to my head with toothpaste type glue. I really hope that I can sleep during the test. I can’t imagine staying awake for that long to be told, you need to be wide awake throughout this entirely boring test (the last EEG I had included a darkened room – good luck keeping me awake!).

Then, I have 2 MRIs (one without contrast and one with contrast) and at least one MRA (an MRI of the arteries). Then I get to meet with a neuropsychiatrist for a battery of tests for memory, attention, and problem solving.

I’m exhausted just typing that out.

Because I can’t resist bragging, Andrew is doing really well. He will be 6 months (already) in less than 2 weeks. He has a good disposition and is generally happy. He seems to enjoy daycare and he does quite well there. I think it helps that he isn’t the center of attention there because I don’t think that neither Bob nor I tend to focus on anything else.

I forgot to mention in the last post that for the first 3 1/2 months of Andrew’s life, I was nearly OCD with stories of child abuse. Very literally searching out stories and often finding myself reading or watching them after I told myself no more. Heartrendingly awful stories. I convinced myself that without reading these, how would I know that I could be a good mother? I need to watch for signs that I could do these things.

I can never unknow these things and I hate that I felt the obsessive quality with which I sought them out. It is completely disturbing to me now that I ever did that. I felt comforted that after reading each story, I felt an overwhelming need to hug, kiss, and comfort Andrew (even though he didn’t need to be comforted, I did).

Hopefully my next post will be full of good news that my memory problems are either fixable or at least manageable. It terrifies me that they aren’t. While waiting for the neurologist, I fantasized that he had a new and experimental procedure that I qualified for. In his office, he could use a very long and large needle to insert it into my temple, and therefore my brain, and place stem cells to give life to brain cells long gone. It would be terrifying and horribly painful, but worth it. I could go home and walk normally (focusing so much on my memory right now has created regression in my leg) and be confident about my abilities. I could easily take the stairs, I remembered things. I no longer annoyed people with questions about every-freaking-thing, including what our conversation (that we were currently having) was about.

Ah, fantasies, huh?

So, here I am. Ready to face stuff that I have been valiantly trying to avoid. No dice.

Warning: more taboo stuff.

I don’t feel like a mother. No, I don’t know what a mother is supposed to feel like, but it is a far cry from what I thought it would be. Many experiences of emotion have dramatically changed since the stroke – a muted sense of emotions that I used to feel so strongly. Love, happiness, sadness, all of it. So, here is the problem – I have had an incredible sense of connectedness to babies before. I don’t feel that with Andrew. It is confusing, frustrating, and makes me continually question my worth as his mother. This originally led to feeling that the world would be no different whatsoever without me. Of course, I knew this for what it was and saw my doctor to up my anti-depressants. While I no longer have these thoughts as strongly (they have always been niggling in the back of my head), I still have such a muted feeling of love and happiness for Andrew. I don’t care if others have experienced it, I cannot possibly believe that I could be as remotely a good mother as Andrew deserves. I hate that feelings that used to come to me so easily don’t tug at me any longer. How awful to say this about my own child. He is so very awesome and adorable and everything that anyone could ask for, now this is on the internet. I hope that I (1) change and (2) can explain this without making him feel awful about himself.

I have been called out at work. I have avoided posting about new cognitive issues for a really long time because I have work friends on Facebook where I link to this blog.

Memory problems have been plaguing me every since the seizures have popped up (what is that, almost 2 years or so?). Not just things like “hmmm…what did I have for breakfast this morning?” kind of stuff. Worrying stuff like picking up a prescription and forgetting and returning to the pharmacy, literally the very next day to pick up the same prescription. Like Bob telling me that he is grilling chicken for dinner and I ask him repeatedly afterwards if I should make something for dinner. He has been utterly frustrated with me. I totally don’t blame him. How old would that get (and how quickly)? It’s not just sometimes either. Never just once a day. Multiple times a day and it drags into work. Today, I wanted a bottle of diet coke. I knew it cost $1.25 and I gathered a dollar bill and searched for a quarter. I was so focused on the quarter that I grabbed one and walked down the hall. As I got to the machine, it dawned on me that I would need more than $0.25.

I realize that this example sounds silly. The thing is, I have been trying to compensate by taking detailed notes of meetings, conversations, and articles that I read. Once away from the meeting, conversation, or article, I cannot recall pertinent information. I have read an article several times not realizing that not only did I read it, but I took more than one set of nearly identical notes about the article. I knew that I have a sinkhole in my memory and that seemingly random information falls in never to be recalled or gathers on the edge to be remembered, but I didn’t realize how deep and serious it was until very recently when a concerned supervisor asked about it.

I struggled with how to respond. I could simply say “yeah, so I’m trying to deal with some stuff” (weak answer) or I could be painfully and humiliatingly honest. Honesty won. I cannot begin to explain the pain and struggle it was to press the send button. (1) Having to admit these problems to myself. (2) Admitting weakness to people I respect. (3) The frustration that comes with brain damage since I can’t point to my brain to say “see this right here? See how there is a black spot? That’s a problem.”

I have contacted my neurologist (apparently more than once, ugh) and cannot get in until October without the doctor’s explicit permission given his schedule. I know that this is how it goes. Medical specialists have packed schedules. I’m hoping that he can get me in sooner, but what if he can’t? What if I have to wait until October and my memory gets worse (not sure this could happen, but it is a worry)?

So, where is the good stuff, you ask? Grab your hats, I’m about to blow you away!

Andrew has tooth! One little sharp razor blade on the middle bottom. It is just breaking through but it is so stinking sharp! Others are on their way and although he is in pain and drooly (his cousins call him Droolpy!), he is taking it in stride and is still so happy and talkative (he is trying out all sorts of consonants and vowels). He really doesn’t let us get a word in edgewise. If you hear him talking, do not believe a word of it. He is just telling stories. We did not do what he is complaining about and he did not do what he is bragging about. He just doesn’t know what a lie is just yet and has a troubled relationship with the truth.

There is no doubt in my mind that I love him so very much. Bob is so smitten with him – Andrew has Bob wrapped around his little finger. God help him while he grows. His parents will try not to be helicoptery and overbearing, but there is no telling what will happen. 🙂

So on and so forth

So, life is a lot busier now. Not unmanageable, but dang busier, that is for sure. For the first few months, Bob and I traded off nights for getting up with Andrew – every other one was mine. It was nice to get a ‘full’ (I mean, not really FULL full, but full enough to count) night sleep every other night. Then, THEN!!, Bob went off to Nigeria for 2 (TWO!!) weeks and I was a single mom during that time. I don’t know how people do it – I ate like crap, was exhausted constantly, the house looked a mess, and I was a mess. It didn’t really help that I got sick and as I was getting over that, Andrew got sick and gave it to me. It’s horrible enough to take care of an infant when you are sick, but when you’re both sick? The hole just got deeper, like a lot deeper. To put it simply, it was hard. Really hard. At one point, I left Bob the nastiest of all nasty grams on his voicemail. Andrew was crying and screaming, I was washing bottles AGAIN, it was a weekend which meant I was the only person to entertain Andrew every minute (the kid needs all of the attention in the world), and the house was awful. It will never happen again, Bob. Never.

So, anyway, now that we have dispatched with the necessities, let’s move on to more interesting (to me) stuff.

Benefits from the pregnancy on the stroke stuff: I now have a sense of satiety. Yay! I’m hoping this will make losing weight easier because, dang, baby weight is really hard to ditch. (quite possibly from the disturbing addiction to Taco Bell tacos and McDonald’s cookies during pregnancy, but you didn’t hear it from me)

Costs from the pregnancy on the stroke stuff: weight, as mentioned above. This is difficult because any added weight makes movement just that much more difficult. I’m looking forward to dealing with that soon, but apparently I’m not ready yet.

Oooh, I forgot about another possible benefit (may or may not be related to the pregnancy) – my walking has improved! If I concentrate, I can now roll my foot during contact with the ground. When you walk, your heel strikes and then your foot ‘rolls’ from the heel forward until you push off with the ball and toes of your foot. It is going to take some time to make this automatic, and I need to concentrate on it with every single step until that happens. I was thrilled when I first discovered this. Woo hoo!

Stairs are more difficult because 1) the added weight and resulting balance problems from losing weight and the change of center of gravity (discovered by falling downstairs and spraining my big toe) and 2) I’ve discovered that walking upstairs is difficult because I don’t have the strength/coordination to be able to push off the lower step to the upper step. I’m working on it though. 🙂 Oh, and apparently having difficulty finding words does not help in communication. Bob asked where the burp cloth was and all I could say was that ‘it’s on the thing next to the thing’. Surprisingly, this did not help him find it. Weird.

Also, I had to give a presentation at work, even though I practiced it, I could not find my words. I actually had to ask the audience the word I was looking for – I could easily define the word, but not recall the word itself. Embarrassing.

I have other stuff happening, but I hesitate to talk about it right now because I’m still working through it, both how to deal with it and what it means. Updates to follow.

Hello Kermit!

He’s here! My beautiful and awesome baby boy – Andrew Paulsen Rehfeld. I was so excited to meet him but didn’t want him outside in the world because 1. it was so very cool to feel him move and hiccup 2. I could protect him so much better while he was in me. I’m so totally going to be an overprotective parent. Bob will have to be my counterpart and help TRY to reason with me – good luck, pal.

I was neglectful of my blog for a long time because I was a freaky pregnant person – I was constantly, persistently scared that something was wrong – he was going to die any second all of the time. Right after hearing his heartbeat, I was absolutely convinced that he had died and we wouldn’t ever hear his heartbeat every again. I simply didn’t trust myself to write anything for a very silly reason – what if I wrote about my fears and they came true? I’m a practical, logical person but this fear was overwhelming.

In any case, my pregnancy went really well and there was probably no need for me to be in the Super Duper Really High Risk category, but I felt much safer being in that category and having that safety net. I had scheduled my planned c-section for February 4, 2013 (planned section due to needing to avoid valsalva – pushing) and didn’t tell most people because, again, I was scared that something would go wrong.

We had to call the hospital at 7 am to make sure there was a bed for me and we had to be there by 8:30 am. Thankfully, there was room and we made the 45 min trek to the hospital. We got in pretty quickly and got started on the procedures to get me into the operating room. A fairly new nurse tried to put a rather large gauge needle into my hand and immediately blew a vein. That started a domino effect that was not pretty. Bob was standing at my side and I looked at him and told him that I didn’t feel good. I always mean it when I say this. Always. Anyway, no one was listening or didn’t care. Well, my BP dropped to 60/30 and I fainted twice. Andrew’s pulse dropped to 100. Well, they took me seriously then! Apparently, from what Bob said, I got a lot of attention. Doctors rushed in, an IV was started in my elbow pit (where it should’ve been in the first place, IMO), and was rolled over to my left side to help Andrew out. I came to in tears for some reason and was surrounded by people who looked rather relieved that I could talk to them.

Then I started having contractions! It was probably going to be Andrew’s birthday no matter what! Bob was taken out to get gowned up and I walked to the OR (without undies, of course – how embarrassing!). I got the spinal block and was terrified that it would be reminiscent of being paralyzed. Thankfully, it was a totally different sensation. Bob came in and sat by my head and I think we both appreciated that the screen was high enough so that neither of us could see a thing. After a lot of tugging and whatnot (the doctor said that right after the incision, Andrew thrust his arm out the opening as either a ‘fight the man’ or a wave of hello). I remember the doctor saying “well, hello!” but they took him out the normal way, not by taking his hand. While I was being tugged about, Andrew went to the incubator and Bob followed. He started wailing (and sounded like a duck!) and I started bawling – I have no idea why. I got to meet him about an hour later and was (and still am) pretty sure that his is the most awesome baby to ever be (though, I might be a *little* biased).

It is now nearly 5 weeks later and I still think he is awesome. Thankfully, Bob and I switch off nights to get up with him, but he usually only wakes up twice a night (yes, I realize that I’m lucky). So, one of us gets a good night of sleep every other night. This will come in very handy when I go back to work.

I’ve felt as though I could never be the mother he deserves because I’m still limited by the aftereffects of the stroke. Although, he wouldn’t exist if I hadn’t stroked (the stroke led to therapist which led to reconsidering a lot of my choices). In addition, this clearly is an indication of depression (as well as other behaviors that I’ve been watching for). I have an appointment with my GP to restart anti-depressants soon. I’m well aware of PPD and general depression and I will act quickly once I see signs. Now that hormones are stabilizing, my brain chemistry is going back to pre-pregnancy and, therefore, need to be corrected/supplemented/however you want to see it with medication. Not only have I accepted that, I believe it to be necessary and needed – much like insulin for diabetics.

All-in-all, life is pretty great. I’m bowled over with the awesomeness of this kid, but also with the accompanying responsibility that he represents. I plan to be around and take care of myself for as long as possible to watch him become an awesome person.

White knuckling it.

I’m relieved to have not had any other suicidal issues. I’m the world’s worst depressed person though. My depression manifests itself in being snappish and feeling attacked and lonely and suicidal. The suicidal thing is when I’m at the worst end. I’ve mostly been snappish (mostly to Bob, lucky guy). I never realize when I’m doing it – I think that I’m using a normal tone, but Bob points out when it isn’t normal.

Anyway. I’m at 17 weeks! woo hoo!

I gave blood for the non-invasive genetic testing to see if there were any fetal abnormalities and the results showed that I’m a carrier for Meckel-Gruber Syndrome. Warning – DO NOT google images. It was a huge mistake on my behalf. M-G is a fatal disease in which the fetus dies in utero or shortly after birth. Both parents have to be carriers for the fetus to get it, so Bob gave blood to determine if he is a carrier. The risk is largely dependent on heritage (highest for Finnish) and even though we knew the likelihood was small, we (of course) talked about what would happen if Bob was a carrier and, of that, the 25% chance that Kermit (thanks to Jeanette for the nickname!) would get it. It was a really tough discussion.

Thankfully, Bob is not a carrier. So, there is a 50% chance that Kermit will just be a carrier – we’ll cross that bridge much later.

I think that pregnancy helps with the stroke – all of the hormones flooding my brain has, surprisingly, stabilized my mood, since I’m not on anti-depressants and I’m not *nearly* as bad as before I started anti-depressants.

However, stroke does not help with pregnancy

1. As I mentioned on here before, I have no sensation for hunger or satiety. The first response people usually give is “I wish!”. But they don’t realize that you have to eat at some point during the day and there is no satiety signal which means you have no idea when to stop eating. This was a large contributor to the 20 pounds I gained post stroke.

2. Similarly, I don’t get an early indication of needing to use the restroom. If sitting or standing, I get the ‘whoa! get thee to a bathroom stat!” notice, but nothing before that. I didn’t realize this was the case before I got in the family way since I thought it was just me being lazy or not paying attention or something. I’ve never had to get up in the middle of the night to pee (thank you for your sympathies) and now, I’m up at least 2x per night. The problem is that the bladder seems to communicate the need to my brain, but my brain does not pass on this info. So, I wake up in the middle of the night and can’t get back to sleep. I’ve learned it is because I need to visit the bathroom. I do that and I get to go back to sleep. It took longer than I would like to admit to learn that. 🙂

I am nervous and hesitantly excited about this pregnancy, but I’m not entirely thrilled with every thing that seems to come along with it. For instance, it is amazing how many people feel the urgent need to advise me what not to eat or drink or what activities I should avoid. That is the small stuff. Then comes the really weird need for people to want to grope me. So far, I’ve had 4 women who cannot help themselves from rubbing my stomach.

Here is the things I have against this:

1. I am not far enough along to warrant this. Right now, they are basically fondling my fat.

2. I object to the idea that once a person becomes pregnant, their body becomes public property for people to touch and advise upon. When I object, I am apparently just not excited enough. I know that I’m supposed to jut out my belly and be jolly about everyone and anyone putting their hands on my body, but I’m not and I won’t. I object. I have even groped some back and you wouldn’t believe the response. How dare I?! Yes, indeed. 2 people have actually said that they have the right to rub it. The right? Where does this entitlement come from? It is odd.

3. I have had enough people touch and do things to my body without my consent. I didn’t have a voice then. I do now. And I will use it. This is my body and I get to consent to who can or cannot touch it. One person was so kind as to ask. Unfortunately, I didn’t answer fast enough and the magnet of my belly and her hands was too great for her to hold back. Sometimes I may say no, mostly I just want the respect that everyone else in the world gets.

This past weekend was a lovely 3 day weekend in which we tried to finish setting up our newly renovated bathroom (it’s about 95% complete…that last 5% is taking FOREVER!). I noticed an uptick in PVCs (premature ventricular contraction of the heart) which is something that is difficult to describe, it is kind of ‘off’ and fluttery. I cough and it helps to reset it, but it concerns me and I already have a call in to my cardiologist to make sure everything is okay.

As expected, between the stroke, heart issues, and seizures, I am in the Super Duper High Risk category in my OB’s office. I expected as much. The plus side is that I get to either see Kermit or hear the heartbeat at every visit. It is so very reassuring.

Even though I’m in this category, I’m trying desperately to avoid special treatment because of it. I know from experience that the special treatment is addictive and the let down when it is gone is really very lonely.

I’ll end on a good note – I haven’t felt ‘movement’ per se but felt some fluttering! It was cool and very exciting. 🙂