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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. 🙂

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Incubation

Okay, so I am making another person now. It’s exhausting! 😉 Interestingly, the first trimester is pretty similar to the after effects of surviving a stroke:

1. Queasy a lot.
2. A little pukey, but not much.
3. Forgetting words – please. I perfected the work-around for finding words a couple years ago. I actually got a job in which the interview was basically me doing charades and the interviewers guessed the words. I’m not joking. That was my State Farm interview. I knew what I was talking about but couldn’t access the words and they were really good sports about it. It also happened on my ‘exit interview’ (leaving party). I couldn’t remember something and I was describing it and some random guy standing nearby said the term. Thanks, random guy!

So, I *have* to be on anti-convulsants since a seizure would be pretty bad for this wee parasite I’ve got. To reduce any possible side-effects of my medication, I chose to completely stop anti-depressants. All was going really well until about 2 weeks ago.

Depression is trying desperately to sink it’s teeth into me and I’m now having to make the very difficult decision whether it would be better for me to return to meds or to white-knuckle it through the pregnancy. That would mean 30 more weeks of this. I have an appointment with my awesome therapist to discuss it as well as my obstetrician. This is not an easy decision. Maybe, if I know that there is a light at the end of the tunnel, I can make it. BUT, I’m already having passive thoughts of suicide, which wouldn’t be helpful to me or the parasite.

I’m truly torn. I need to find time for some introspection to see if I have it in me to stick it out. I think that I have that strength, but is it worth it to take that risk?

In any case, I will make the best decision for me and Kermit here (a friend suggested this nickname and I just loved it).

Oooh, I just have to tell you the story of how I became all knocked up/in the family way/killed a rabbit/got pregnant.

I had been doing fertility treatments for over a year – this includes lots of hormones (that made me gain ~20 pounds in that year) and giving myself shots in the stomach. In addition, I went through more than half a dozen rounds of IUI (intrauterine insemination) that truly isn’t all that fun and is just a little painful. After 7(? I don’t recall the exact number, I might be blocking that out) rounds of IUI, Bob was in Nigeria and I decided to give myself a one month reprieve and start up again the next month. While in Nigeria, Bob was offered a bowl of “Nigerian Fertility Soup”. This is his description:

“It is green, the texture of mucus and tasted like Nigeria smells.”

I have never been to Nigeria, but I took that to mean, it wasn’t the tastiest soup he’d ever had. He came home and Voila!

Stupid $3.00 soup. I could have saved literally thousands of dollars and a lot of anguish by just having Bob slurp that damn soup.

Anyway – yay!

P.S. I totally forgot to mention that I have been on a program with a personal trainer (yes, how very fancy of me…he’s really cheap though) and am lifting weights 3x/week. I’m getting so much stronger and it feels awesome. 🙂

Sleepy, good life!

So, last time we talked, we went over the seizures that I was having. Turns out that it is a pretty bad thing. Who knew? Since the angiogram was normal, I saw a neurologist and he diagnosed me with tonic seizures – tonic meaning that I’m stiff when seizing, not clonic (jerky).

He recommended an anti-convulsant. I’m on 25 mg now and titrate to 100 mg over a month. Since it is a mood-stabilizer, I am decreasing the anti-depressant. Are there any other ‘anti’ meds out there? Maybe I’m missing out on other good drugs.

Just to make life interesting, the anti-convulsants make me exhausted. Tired and totally wiped out. Thursday night I slept for 11 hours, Friday another 11 hours, and Saturday was 10 hours. Last night was 9 hours but I could take a nap right here and now and I am totally not a napper.

Hopefully, since I’m at the lowest dose right now, my body will learn to tolerate the drug and the exhaustion will go away. Especially since I’m most likely never going to be able to get off the drug (I would have to pass a neuro test that I haven’t been able to pass since the stroke. Plus, seizures = yuck).

So, with that out of the way, lets talk about the good stuff!!

1. I’m totally starting to ‘get’ time. I’m very excited about how much I am improving with the time loss issue. Yay!

2. The neurologist looked at my MRI/CT/angiogram results and said that while a good part of the damage was in the basal ganglia, the other part is just forward (and part of) the motor cortex. He said this affects initiation – starting to do something. Why is this good news, you ask? Because what a relief that it isn’t me having difficulty with tasks, it is the initiation of the task that is the issue. Mostly it has to do with physical initiation of things – stairs (as I have mentioned a quadrillion times before), getting on/off my bicycle, sometimes with walking. I haven’t noticed the equivalent of cognitive initiation problems (talking, thinking, writing, etc.), but now that I know that it is a problem, it is so very much easier to deal with. Yay!

3. I have plants again! This is an awesome deal for me. It is the first big step that I feel that I can take care of something outside of myself/my head. I’m so very excited! I have to reign myself in because I want to buy them all! I want ALL of the plants! I love indoor plants the most and have 2 now, but I have a couple tomato plants, some basil, rosemary, thyme, hydrangeas, begonias, and daisies. I tried my hand at a couple last year, but didn’t feel confident and didn’t have a good yield because I didn’t pay attention to them. Oh my heck you guys – I am so very excited about my beautiful plants!

I wish you all a very happy and healthy summer!

Salsa dancing

I only mean that in salsa dancing, you take a step forward, then backward, then to the side, etc. That is where I am now & I keep putting off posting to determine if I’m actually ahead or behind or sideways or whatever. I still don’t have the answer but I’m posting anyway. So there. 🙂

My step(s) back:

I was working in the flight simulator (a small, confined space) and had to turn my head to look behind me to check out some info. I looked over my right shoulder, to about my 5 o’clock. I lost vision. Weird, so I turned back around and got it back. No big deal, right? When, oh when will I every learn?!

I had dizziness a few days later and finally told Bob about the loss of vision thing. He wasn’t thrilled with me so I got it checked out. I scheduled a cerebral angiogram (they pump dye into the arteries and check out the health of the arteries in the brain). The procedure was a pain (ha ha) and the doc claimed that I wouldn’t remember a thing (again, ha ha). I remember all of it. I remember that, apparently Versed makes me really super chatty. They couldn’t get me to shut up – “Ma’am, I just need you to be quiet for 30 seconds while I place this wire” Me about 3 seconds later: “How long is 30 seconds anyway? Why isn’t there a clock around here? What time is it? Is that my heart on the x-ray screen?” on and on. The poor guy. It was explained later that talking makes the arteries wiggle, making his job threading the wire up from my hip, through my heart, to my carotids to inject the dye, much harder. I’m nothing if not helpful (by ‘helpful’, I mean a pain in the ass, but you know that).

A month or so later, I had a seizure. I was sitting down and told Bob that I wasn’t feeling so well. Then BLAM! I face plant on the tile and when I didn’t answer Bob’s calls to see if I was okay, he came over and saw that I was face down on the floor, stiff, and grunting. He flipped me over and kept asking if I was okay. I starting hearing sounds, not recognizing them as language, then my vision starting coming back and I saw something over me. I didn’t recognize Bob at first, but then I did and I had *no clue* what was going on. We found out later that this is normal postictal (after a seizure) confusion. This is the third seizure in a year and the fourth since I stroked.

My appointment with the cardiologist to check my heart arteries was normal and I have a follow-up with a neurologist (in April) to see what may be going on.

Other steps back:

I want to articulate the other insidious aspects of life that really blew my self-confidence and self-esteem into smithereens.

The time issue that I mentioned in previous posts. The memory issues, attention issues, inability to hustle, my nemesis – the stairs, getting dressed, walking, driving (you would *not* believe how challenged your brain is when you simply move your hand from the top outside of the steering wheel to the bottom inside – it truly threw me for a loop when I did this without considering the effects), processing speed of thinking, depression, the changes in relationships, relating to people, use of gestures, general effect of anxiety, shoes (trying to put them on, getting them to stay on, trying to get them off). This list is incomplete. These are EVERY SINGLE DAY things. They beat you to a pulp. The successes are so small and rare, that they can’t compete with the negativity of daily failures. Hmmm…I wonder why I was so depressed and angry? It is so very beyond overwhelming. I don’t think you could possibly understand unless you went for, say, just 1 hour of having to think about every single move you made – every gesture, every conversation, every step, everyfreakingthing.

Okay, the last back thing – I have discovered a sinkhole in my memory that plagues me. I haven’t found the edges yet, but I remain hopeful that I will. There are somethings that somehow make it over or around the sinkhole and I remember them. Too many things fall right in. I can never tell which it will be. For instance, I need to know acronyms for work. Yes, really. You might not believe that the government uses acronyms, but I am here to tell you differently.

I need to use RVR for my work. I cannot remember what it stands for – I know what it is, but now what the acronym stands for (runway visual, something). LiDAR (light detection and ranging)? I know what that is. I never use it. Of course not. 🙂

Blah, blah, blah – whine, bitch, and cry. No one wants to hear about the negative stuff. So…

My steps forward!:

I am no longer an anxious freak about sleep. When I found out how important to brain healing that sleep is, I beat myself up over never giving my brain time to heal. So, I became super anxious about sleep. So bad, that one time Bob & I were watching a football game and enjoying it. I looked up and saw that it was 10:30. Thirty minutes PAST my bedtime! Horrors! I actually turned off the TV, turned off the light, and rushed to bed. Poor Bob was sitting on the couch in the dark wondering what just happened. I’ve come to terms with sleep now and it is so very freeing!

Time! I’m getting time figured out! Slowly, but I am and I’m so excited about it! For instance, I would actually refuse myself something if I felt like it was too far away to walk (we are talking maybe 50-100 feet here). Now. Now! Now, I was in the grocery store and saw a half-eaten banana discarded in the bread aisle. I actually picked it up and walked it to the customer service area. On my way back, I realized that I didn’t even give it a second thought. Awesome!

That ties into my walking improvement. I still have a bad day here or there when my foot won’t fully cooperate, but look at what I did at the grocery store!

Also tied in – I’m getting stronger. Previously, I had to keep in mind that one side of my body was consistently weaker, making for uncomfortable situations (trying to get on a high van loaded with pilots without help or picking something up with my left hand when my right is occupied). I’m getting stronger. I’m getting better.

All of these successes lead to more confidence without falsity. I think my first brush with confidence (with the work discussion mentioned before) was false. I wasn’t truly confident, but I really wanted to be. I’m getting better with that. Confidence comes, for me, from knowing that I know something/can do something without needing to push it in someone’s face. It’s coming, I tell ya (ha! See what I did there?!)

Getting out of my head more lets me focus on improving other things. I can relax more and worry less which makes work that much easier. I’m not constantly questioning myself as much. I contribute more.

I love this!

I know! I know! I know!

I recently read a new booklet for strokers called “Mapping the Brain” while preparing for my new project – starting a support system for new strokers at the hospital where I volunteer.

One of the pages details the behavioral differences between right- and left-brain damage. I planned to skim it because I’ve read it so often in other articles. Well, something caught my eye – Right brain damage can cause…

drum roll please

Problems keeping track of time!

I know! I have an advanced degree and yet I couldn’t articulate what I was feeling & this cute little booklet just up and described it perfectly.

When explaining it to Bob, I finally got the perfect example:

Imagine that I time you on your trip to the bathroom. You go in, do your business, *wash your hands!*, and come back to me. I say “how long do you feel it took?” and you respond “3 minutes”. The stopwatch shows 2 seconds.

It wouldn’t feel accurate, right? That is how I feel all the time. Always. About everything. I had 10 minutes before a meeting & didn’t feel as though that were enough time to stop by the bathroom before the meeting started. It isn’t rational, but just like when I showed you empirical evidence that it only took you 2 seconds to go to the bathroom, and you felt like you *knew* that it was longer, it is hard to over-ride the feeling.

I am hoping to share some cool news as soon as I hear about the program I am starting at the hospital – hopefully it comes through, how cool!

🙂 Be well.

You are welcome for the earworm!

After the fires (Dismal Swamp, VA), earthquake (Mineral, VA), and hurricane (Irene), it indeed seems like something is going on, right?! I simply await the locusts.

In response to concern noted by Bob, my dad, and my brother, I drove to Wake Forest, NC to wait out the hurricane with my brother. Although I was totally bullied into going, I really had a blast. I got there Friday evening, and after a delicious dinner at the Mellow Mushroom, we decidedly bruised our collective beer muscle. We pickled our livers. We got pissed up. We got sauced. You get the idea. My favorite part was drunk-dialing Bob’s cell phone. He can’t get cell service well in Nigeria so he forwards his voicemails to google-whateveritiscalled. Basically, the voicemail is translated to text via email. I cannot wait to see what the translation will be if Bob ever sends them to me (~20 total from Friday night – trust me, we were very funny).

A lot has happened since I last wrote. As noted above, my decisions now are clearly different given my medical history. BS (before stroke), I would have ridden out the storm in my home. But, because I don’t trust my anxiety, I give in to others much more easily. A good thing? I don’t know. No need for value judgment, I guess.

A recent observation – I apparently have good and bad days in relation to stairs. I was collecting data for a study that required me to travel a flight of stairs multiple times a day. You would think that as time went on, that I would get better at it, right? Surprisingly, no. Some days, I took those stairs like there was chocolate at the top and I was PMSing. Other days, I had to grip the railing to practically pull myself up the steps. It was really odd to me. Hopefully the bad days are fewer and farther between than the good eventually.

Oooh, I almost forgot – we had a *very* exciting weekend right before Bob left for Nigeria. I had a 3-day weekend by working my 40 hours in M-Th. On Saturday night/Sunday morning at 2:00 am, I got up and wasn’t feeling well. Bob woke up and asked if I was okay. “think so” was the response. After getting halfway into the bathroom, Bob heard a thud and crawled (he broke his foot a few weeks ago) over and kept saying my name. He said that I was unconscious and not breathing. (Meh, I’ve been worse) I finally came to but didn’t know where I was or what was going on. Bob called 911 and I got taken to the hospital. I got an IV & all that good stuff (including morphine, but I HATE morphine). Doctors couldn’t find anything wrong so I went back home at 6 am. I figured out what it was Sunday evening – I had forgotten to take the antidepressants for 3 (THREE!) days. Apparently this causes a revolt. A mutiny. A strike. You get the idea. So, I have not forgotten since then. It was not pleasant.

I read some more information about right side brain damage on the Mayo Clinic website as well as the American Stroke Association website and found some really interesting information. Right side brain damage can create some interpersonal issues. For instance, we tend to misread or simply misunderstand body language and tone. ASS (after Sherri’s stroke), I noticed an uptick in the amount of dents in my shin from Bob kicking me under the table when I would say things that were inappropriate, blunt, tactless, you get the idea. Even though I *know* that I am lacking the skill, I still have difficulty with it. Like it is impossible to hold a conversation and read nonverbal language at the same time. This has not helped me. Although, it provides entertainment after the fact.

Lastly, I continue to have age/time issues. I am getting better with estimating the amount of time it will take me to do something and not get overwhelmed with it. However, I continue to have difficulty comprehending the passing of time. The changing of the seasons baffles me – not on a level of intelligence, I understand the whys and hows and whatnot, I am baffled that it is now summer and that fall is on its way with cooler weather. Jeez, look at that, I suck at trying to explain this. In addition, seeing people age (family, friends, actors, you get the idea) astounds me. BS, I understood the concept and expected it & was never surprised by it. While I still understand the concept, it really escapes me and leaves me stunned when it happens.

In sum – life is good and improving. Yes, that is a blunt ending, but I have no ‘Lessons of the Day’ shit, sorry. 🙂

Awesome People

I’ve wanted to post this for awhile, but lacked the context. Well, hell with it – I’m posting it anyway.

I am so very thankful for many people that have been supportive, understanding, caring, open, and just plain wonderful in general and to me.

For example, my car was dead this morning. We live ~2 miles from where I work, so I decided to walk. First off, this area is nearly pedestrian hostile. There are little to no sidewalks and the area where I walked, not only didn’t have sidewalks, but there was also no shoulder. No shoulder + blind turns + me walking nervously (probably looking a little drunk early in the morning!) + shoes that were not made for walking any distance = a little scary walk. I got to the gate and the always lovely security guards asked a guy to give me a ride to my building. I seriously love those guards. They are funny and nice and chat with me nearly every morning.

That was just this morning.

Every boss/supervisor that I have had since the stroke has been incredibly wonderful to me. Florian never let me give up when I was so terribly overwhelmed with depression, learning to walk, and finishing my dissertation. Dan tried to make staying in IL and at State Farm as possible as he could. Lisa is currently so supportive. I was honestly so nervous to tell her about the stroke (what if she really questioned who she hired?) and she handled it with surprise that I would be nervous. In my performance reviews, she has given me every opportunity she can to help me be who I need to be/who I am. In the last review, if it weren’t for my team lead, I would have fought the review that I got. I did it at State Farm too. I’m not at my potential & to hear that I okay as I am makes me want to argue that no, in fact I am not okay as I am. I am better than this.

Truly though, if I were to get a review that was harsh, I would probably get anxious, nervous, and overwhelmed and it wouldn’t bring out who I know that I can be.

I’m totally getting there, too. I have wonderfully heated email exchanges about research and the nitty gritty details that some people tend to overlook or accept as ‘well, we’ve always done it that way’. I am challenging the status quo and that is where I live. That is where I am comfortable. I try my hardest to be professional, so as not to damage the message for the delivery (thanks, Florian!), but that is me too. I’ve always worked on tact.

Other people give me the kindest of breaks when I was short with them or awkward with them. Such good friends that allow me to have a fit and still welcome me when my snit is over. I can’t possible name everyone, partly because I don’t know all of their names but also because I would miss a name and would have to apologize all over again! Just know that I know who you are and I am grateful for you.

In sum – this quickie is brought to you thanks to gratefulness and appreciation.

🙂 Love and happiness.