update

31 January 2012

Mama and Babe

I am getting better and better with each week. My appetite is back and I have eased into a full-time schedule at work. I started with a couple of hours a day, then four, then six, and now eight. My job has been very accommodating, so I am fortunate.

I have had two recurrences of blurry vision but thanks to my cousin Sarah, who is a genius physical therapist, I learned that this happens when I hold my head in a certain position for an extended period of time. Specifically, looking to the left and up, as it puts pressure on the right artery. When the blurriness happens, it starts as a small ring of blur and then gradually grows into a large ring so everything inside is clear. Eventually, it gets so big that it fades out and I can see this whether my eye is open or shut (it is only the left eye). I only figured this out because Sarah advised that I pay attention to how I was maneuvering my head before the blurriness set in.  Now I finally feel a sense of control and not fear that at any moment, my vision may be blighted.

I have also figured out some compensation tactics for work that have eliminated the headaches I was getting. I am only using one monitor and keeping the windows that I use on that monitor smaller than normal so that I can take in more information without having to move my eyes around.

Last week, I went to see an optometrist to discuss vision therapy. While I was there he did the same tests that I had done two weeks before by the ophthalmologist (that is the first time I have spelled that word correctly) and when I saw the results of my field test it was clear that my peripheral vision has improved immensely. He said that I had the best vision he had ever seen from a stroke victim but I am also very young. He did not say that I was the sexiest stroke victim he had ever seen but I think that was assumed. We talked about therapy, which would be 30 minutes a week in-office, complemented by software I could buy to use at home. Unfortunately, this program is expensive and my insurance does not pay for it. I decided that since my vision seems to be doing so well on its own that I would skip the therapy.

I am processing information, both visual and auditory, much better now. I can handle going to Target and looking at the overwhelming shelves of products. I can go to meetings at work and absorb what everyone is saying. I thought I could handle all of that the first week I was home and now I realize that I could not.

Aside from minor vision deficits, my only other issue is tiredness. I have been taking naps every day but now that I am working full-time, that’s not an option. I guess I need to start going to bed before midnight but that’s hard. I hope to only be on the blood thinners for another five months and then I should get my energy back. So I can do important activities like read everything on the internet.

Last week I had an MRI and two MRAs (or maybe two MRIs and one MRA). That was one hour and forty-five minutes of so.much.fun. I was supposed to see my neurologist two weeks later but he called me the next morning at work, which was not a good sign. The MRI showed that I had bleeding in the brain and that was not evident on the first MRI I did, the day of the stroke. He had another specialist review my imaging and they determined that the bleed looked old, so it most likely happened right after I’d had the first MRI. He advised me to go off the baby aspirin and stick with the blood thinner. So now the trick is to keep my blood thin enough to not clot but thick enough that I don’t bleed. Which is why I switched to drinking Clausthaler beer, the thinking man’s O’Doul’s. A beer snob even when there is no alcohol.

The whole MRI/bleed thing brought me down a little. I was doing so much better with my anxiety and relaxing about every twitch being the start of another stroke. Now I have a NEW thing to worry about. Every twitch could be internal bleeding instead! Each day gets better, as I wake up and thank God that I am still here to experience a dead roach on the floor or my spawn telling me she likes my mom better than me.

I will try to keep this blog updated as I recover…it’s just not as fun as Little Wakka. I have so many great friends and family that have offered encouragement, meals, prayers, flowers, nail polish, money, childcare, hugs, advice, contacts to others; thank you so much. It has made this much easier.

In the meantime, I get to enjoy things like rolling my eyes anytime Oscar complains about anything, using phrases like “before I had the stroke” or “ever since the stroke” when I need to get out of something, and making stroke jokes that make everyone else uncomfortable. That last one is really my specialty. The person who created A Stroke is NOT a Joke on Facebook would not be happy. I did get back into my hygiene routine, which is a bummer.

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stroke

17 January 2012

Hospital Family

I guess having a stroke at 31 is a good enough reason to revive a defunct blog. I spend all my blogging time on Little Wakka so I just left this puppy out to rust. People keep asking me about the details of the stroke and it’s too hard for me to spend a lot of time typing or talking so I am putting the details here, as I remember them and have translated them into everyday terminology. It has taken a week to write this and it is looooong.

[Preface: one day before the stroke, I have the following conversation with myself.]

What if I have a stroke? Well, dad had one at 42 so I have at least 10 years. But, I take care of myself so that’s not going to happen to me. 

-Monday, January 2-

It was a holiday Monday so I was out running errands with Beau (my two-year-old daughter). As we drove to the playground, my vision suddenly got blurry in my left eye, in a very localized, concentric way. My head and neck started hurting as well, on the backside, in the lower right area. I made it to the playground and when I got out of the car, my right hand was tingling and going numb. This spread up my right arm and through the right side of my face. A toddler and mom that happen to know Beau and Oscar (my husband) from the playground walked up to me and introduced themselves. I told the mom, Kate, that I thought something was wrong with me and that I may need her to watch Beau (we only have one car so it would be a 45 minute walk for Oscar to come help). I am making a very classy first impression. “Hi, I’m Brooke. I know I look young and awesome but I think I’m having a stroke. Can you watch my kid while I call 911? Thanks.” I sat down at a picnic table and the tingling/numbness did not get any better and I just knew something was wrong. I watched my dad have a stroke when I was 13 so I am very aware of the symptoms. I called 911 and sat in the ambulance while Kate watched Beau (what a blessing to have someone there I can trust, by chance).

The whole time the paramedics were evaluating me I was lucid and could answer all of their questions. I passed all of the stroke tests (smiling without my mouth drooping on one side, raising my arms, knowing the president, etc) and my blood pressure was not abnormally high. I was also hooked up to an EKG and those results were normal. So the paramedics told me that there was no reason to think that I’d had a stroke. I am 31, don’t smoke, not overweight; I most likely have a pinched nerve or a million other things. They offered to take me to the hospital for more tests or they said that I was fine to go home, if there was someone there to watch me. So, I had Kate drive Beau and me home because I knew Oscar wanted nothing more than to wait on me, hand and foot, and I didn’t want to go to the hospital if I didn’t have to.

After a couple of hours my head still hurt, my vision was still blurry, and I knew something was wrong. I’ve had headaches for years but never with blurred vision. I called a nurse hotline offered by my insurance and the nurse asked me a series of questions. She told me to seek care immediately, so Oscar drove me to the ER.

At the ER, I told them that I thought I was having a stroke. I still waited two hours before being admitted. I initially had symptoms around 12:30. By the time I was admitted to the ER, it was 6:00. The first few hours of a stroke are the most important and well, I have missed that window.

In the ER, I had a CT scan and they found nothing. Then I had an MRI and they saw that I’d had a stroke, in the lower right (back) part of my brain. I had two clots. At this point it’s about 10:30, ten hours after the stroke. They gave me medication for my headache and took a bunch of blood from me to test if I had any blood disorders or if there was something going on to cause my blood to coagulate. They thought the reason that I had the stroke was birth control. I had been taking a low-hormone (progesterone only) pill for about four months to treat endometriosis. Clotting is a known side-effect of the pill but that is typically associated with pills that have estrogen in them.

-Tuesday, January 3-

They did an MRA (MRI of the arteries) of my neck and found that there was a dissection in the right vertebral artery in the back of my neck*. It is next to the carotid artery and you have two of them, one on the left and one on the right. The right is the non-dominant vertebral artery. Mine has a tear in it. The platelets are designed to recognize an injury and clot around it. So my blood did just that but some of the clots got through to my brain. They told me that I was going to be transferred to ORMC, a large hospital in downtown Orlando, and that I would be having surgery on my neck. They just had to wait for two neurosurgeons and a vascular surgeon to be available.

[*I injured my neck a month before the stroke. I had bronchitis at the end of November/early December and I coughed so hard that I experienced whiplash symptoms. I would wake up in the middle of the night by my head jerking up in a coughing fit. I couldn’t turn my head for about 2 weeks. I had to turn my torso in order to see something behind me–my friends and I joked around about me needing a neck brace. During this time, I went to Disney World and rode Space Mountain, along with other neck-jerking rides. So I am convinced that that is when I injured this artery. My neck was sore for weeks but I didn’t think it was anything that I should have checked out.]

Until this point, I had held it together pretty well, aside from crying every time Beau left me. But when “surgery” was mentioned, I lost it. My biggest fear for Beau has always been her growing up without me and now I felt like I was being faced with that. I was telling Oscar things like “well, good thing we got that life insurance policy” or “you know I don’t want to be on life support, right?”

Around midnight I finally got transferred to an ICU unit for neurology patients at ORMC. From the moment I got there, the doctors who visited me told me that I most likely would NOT need surgery but they would decide that the next day after I do an angiography. That procedure was done the next morning and it was determined that I would not need surgery; just baby aspirin and blood thinners. Thank you, God. I spent another day/night in the hospital to be observed and then got released on January 5th.

-January 5-

My sister drove me home from the hospital and I was terrified. We were on I-4 at 5:00 on a Friday and all I could think of was that any of the drivers could ram into us and I could have another stroke. Being outside of the hospital is petrifying. With every muscle spasm, twitch, or new sensation I fear that I am having another stroke. I don’t want to leave the house and I don’t want Oscar going anywhere either.

-January 6-15-

Each day gets a little better. I have a lot of anxiety. I don’t want to take any medication for that, so I just deal with it or hug it out. I have had one instance where the blurry vision returned and I freaked out. I was at work and my coworker had to call Oscar to come and get me.

I returned to work this week, for just 2-3 hours a day. I have no restrictions on my diet or activities so I am easing back into things, although as the only person working (well, bringing in income–Oscar works at child raising), there is more pressure for me to get back to 100%.

The lingering issues that I have now are that I tire easily (and need daily naps) and with my peripheral vision. I have deficits in the upper left quadrant for both eyes but since my left can compensate for the right in that area, it is my left eye that suffers more. I can see everything in that area but I can’t process it. Does that make sense? I used to rely on that part of my vision for reading or processing information on a computer screen but now that I can’t, I have to readjust my focal point a lot when I read and this strain causes me to get headaches. Friday, the 13th, was the first 24 hours that I went with no headache. I don’t have problems watching TV because that does not take concentration and focus. I also don’t have issues with the iPhone because the screen is so small that I don’t need my peripheral vision. I used to use two monitors at work (I am a photo librarian) but now I only use one and I keep my windows small to help reduce the strain.

I see a neurologist Monday, so maybe he can give me more advice. The ophthalmologist told me that my eyeballs are fine, my vision is still 20/20, and that the damage is to the nerves. He can’t predict whether I will recover my peripheral vision or not. The fact that my vision has improved daily and that I am young work in my favor. I will continue to have scans and blood work over the next months/year to ensure that my artery is healing and the blood is not clotting.

I now have the problem of treating my endometriosis, since there is no consensus on whether or not it’s safe for me to be on a low-hormone pill. The general physicians tell me “no” but my GYN and neurosurgeon say they think it’s fine since my stroke was caused by an injury in the artery. I cannot have surgery for that while I am on blood thinners, so I am stuck dealing with a whole mess of pain that renders me non-functional for a few days every month.

**********

One of the things that bothers me about this whole freak stroke is that I constantly have to fight for people to take me seriously. The EMTs did not believe I was having a stroke (I told the 911 operator that I needed help because I was having a stroke) and as soon as they saw me, they called off the other help that was waiting. I know that I passed the tests they gave me, that I am young and healthy, and that they are not doctors, but I experienced all of the symptoms of stroke at the same time. When I called a nurse hotline, that nurse couldn’t even see me or evaluate me and she said that my symptoms did not sound like a pinched nerve and she thought it was more serious. The first 2-3 hours of a stroke are VITAL. I am so lucky that I do not have more lasting effects. My stroke had nothing to do with my family history and could happen to anyone, so guard your neck!

Additionally, the non-neuro doctors that I have seen (my PCP, the doctors on the floor/in ER at both hospitals, GYN, and eye doctor) do not believe that I injured my artery from coughing. But when I talk to a doctor in the neuro field, they agree and tell me that this is rare but can happen from things like turning your neck too quickly, doing a yoga pose the wrong way, getting a massage, etc. This is also referenced in the “Vertebral Artery Dissection” page on Wikipedia, which I realize is not a medical journal. I am tired of people in the medical field arguing with me or making me feel dumb when I tell them that my neck was injured for weeks because of my cough. I want to scream at them that I am not over-reacting and that I know my body. I do not go to the doctor unless I am dying and I have never been to the ER before this. I am not overly dramatic or an exaggerator. Most doctors do agree that it could be from the rides I rode at Disney, so I leave it at that. I will never ride another roller coaster and I will always keep a prescription cough suppressant on hand.

Lastly, I just want to document one other experience. While I was having the stroke and for the next few hours afterward, when I was attempting to relax at home, I kept having flashbacks of dreams that I’d had for the past two weeks. I had been dreaming of having the stroke but I did not remember when I woke up. It wasn’t until I experienced it that these memories came back to me. They weren’t identical, as in, I didn’t dream I was at a park with my child, but it was more like scenes of me driving and not being able to see, not being able to feel my arm, etc. As if my body knew this was going to happen. Weird.

I know that my situation could have been so much worse and I am so grateful for all of the prayers and thoughts from everyone. It is clear to me that I was in God’s care the whole time and that even going back six months, He guided me toward decisions that affect how the stroke impacted my life. I have only lived in this town for six months and I do not know many people and Oscar knows literally less than ten people here. One of those people happened to be at the park that day. O has been looking for work for six months and found nothing…while we were in the hospital the Magic called him and booked five games of work. If he were working, he would not be able to be with me all day, take care of Beau, drive me around, and do all of the housework. When I took this job six months ago, I was offered another job the same week and had to choose between the two. I am confident that the job I chose has better health insurance and disability benefits than the other one, although that was not a factor in my decision. And as my mother-in-law reminds me, I am fortunate to have had this happen early and have the opportunity to treat it.

***********

On a positive note, I now I have fun conversations like this..

Me: So, I am going to take a shower. Just listen out.

Oscar: Listen for what? If you drop the soap?

Me: No, if I drop my body.

……….

Me: So, did you cry at all last week?

Oscar: No. I knew you’d be fine. Why, you want me to cry?

Me: Geez. I am just trying to get on the level with your mom and our daughter. WHY WON’T YOU CRY OVER ME?!?

……….

Oscar: What’s in your hair?

Me: Nothing. I just need to wash it.

Oscar: It’s dead skin cells. Gross.

……….

Me: I can’t multitask anymore. What if I am simple now?

Aimee: Your sarcasm is still on so I don’t think you need to worry about that.

Me: I don’t want to be simple.

………

Me: Are my neurons firing?

Oscar: What?

Me: Danielle told me about neurons firing. Do I look like me? Like I still have a spark?

Oscar: You look the same.