Monday, October 24, 2005

In Sickness and in Health

Remember the "clueless infertile" with season tickets next to us? Well, apparently she's given birth to a perfect baby boy after a completely uneventful and smooth birth. Michael was making small talk next to the new father at the game, and congratulated him on the birth of his son. The new father was absolutely beaming, and showing us pictures of his son. He asked if we had any children.

To which I quickly snipped, "No." and to which Michael said somewhat longingly "No, not yet" as he lovingly folded my small hands into his much larger ones and then brought them to his mouth and kissed them. Mucho mucho good husband points.

We went driving yesterday to look at some lake front acreage that we're thinking about buying. We need to sell some farm land we own first to do it, but I think it's an investment that - properly leveraged - will be quite beneficial for us. And, we could then have a vacation/lake house built on the land, and later subdivide a portion of it if we choose.

We were laughing, talking hopefully about baby names. We've had the two middle names for a boy picked (two middle names are a family tradition) for maybe three years and we had finally agreed to a first name for a boy. Michael says that for a boy I keep neglecting the "playground factor" as the names that I've picked out are too "sissy" and the child will end up in therapy because of the merciless taunting that will inevitably occur. So we agreed, finally, with a family name that is sufficiently masculine. We also finally reached a consensus about a girl's name that was not too "trendy."

We were just enjoying the scenery - the changing leaves blowing across the road as we took a detour through a particularly picturesque stretch of farmland and saw a flock (maybe 20 or so) of wild turkeys.

During the drive home, I had three seizures. I've had maybe 12 within the last two weeks or so, after a relatively calm period of six months or better. We don't know what's causing them.

In my last year of law school, I was driving to grab a bite to eat when I had a seizure - and blacked out. I hit my head against the steering wheel, and thankfully during the 'fit' I managed to slam the gear shift into park and halfway jumped a curb. Somehow during the madness, I bit my tongue rather forcefully - almost straight through it - and my mouth quickly filled with blood. Thankfully I was on a side street - and I managed to coast slowly into a gas station where I promptly fainted. I got a nice sized bump on the head from the fainting spell, but was otherwise o.k. When I finally made my way back to school, I walked in to Michael's office and told him what happened. He wanted to go to the hospital immediately, but I begged him not to take me. We went home instead, and I promptly fell asleep for about fifteen straight hours. I went to a cardiologist the next day - and was immediately whisked from specialist to specialist. The next few days were a blur of EKGs, EEGs, x-rays, MRIs, and a great deal of bloodletting to check on blood sugar imbalances, hormones, etc.

During the doctor's visits - I realized that I've always had these little "spells." Growing up, my great grandmother said someone was walking over my grave when I did it. Sometimes I could feel them coming on, but not always. When I did, they were preceded by a tightness and pain in my chest and back - and a feeling of pressure as if I was being crushed. My vision always tunnelled immediately before it happened and the sounds of life around me grew strangely quiet. I also had a completely indescrible feeling of great anxiety that something bad about to happen, but I could never place what it was, and words can't really do it justice.

Afterward, there was always a peculiar metal taste in my mouth - like sucking on a spoon - and an overwhelming desire to immediately go to sleep. Sometimes - when they are really bad - my arms flail out (sometimes one, sometimes both) and I will involuntarily strike out at someone. It can be quite embarassing at times - sort of a physical Tourettes. My back clenches up and people who have seen it say that it looks like I think I'm falling and am trying to instinctively brace myself. Milder versions cause me to just space out a little. I can hear people talking around me - but their voices sound very far away - like the muffled conversations of people living in the next apartment drifting through air vents when I was in college.

As I have had previous brain surgery (when I was two months old) to remove a cyst/tumor, the doctors thought it may be either a recurring tumor or possibly scarring of the brain tissue. During one of the trips to the neurologist, after yet another brain scan, the doctor told us that in all likelihood that it was epilepsy or multiple sclerosis. I sobbed. Michael cried. It was the one - and only time that I've ever seen him cry. No swimming, no bathing or showering without the door open and someone in the bathroom with me, no driving, no cooking, no being alone - period - under any circumstances for nearly four and a half months. I couldn't do anything. And I felt awful. I felt like a failure as a wife. I was only 23, and my husband was being forced to care for me around the clock like I was an old woman. It was heartbreaking. And then the doctor told us that we shouldn't try to have children. I needed to go back on the pill.

I was poked and prodded and sent to every specialist they could find. They ruled out epilepsy and we rejoiced. They ruled out m.s. and we cried with joy. But they never found out what the problem is. Stress, exhaustion and alcohol seemed to exacerbate the problem. Of course, since I was studying for the bar at the time, two of the three were a little difficult to control (and in fact I had a 'medium' seizure during the middle of the exam). I have never had another grand mal seizure like the one that finally spurned me to go to the doctor. I have had hundreds of other - small ones - but have accepted it as part of who I am. They seem to cluster at a time - and it's been a while since I've had one. I was told that I could slowly start incorporating my "regular" life back into my schedule.

You have no idea the bliss of being able to shower in privacy. Of just driving to work - even in traffic. I would never go into deep water alone. I would never drive extremely long distances alone. I stay away from excess alcohol and try to get plenty of sleep.

I have been basically symptom free for the last six months or so, but the last two weeks have been a nightmare. As an attorney, I realize the liability inherent in my driving, so I will have to give that up. I don't want to be like this again. We were supposed to start the injectibles on CD1. Now, I'm afraid to - afraid that until we have a better grasp of what we're dealing with - that perhaps it's not a good idea to move forward.

As he held me last night, he told me that he would be there. That he would help me through this, that he would take care of me and love me no matter what.

I woke up this morning and felt his hand stroking my cheek in his sleep. He has always been so giving, so incredibly strong, so loving. It isn't supposed to be like this. Given our age difference, I was the one that should be expected to spend time taking care of him.

I feel as if my body is failing me. I feel as if I am failing him.

I cried last night as I thought about giving up my independence, of not being able to drive, of not being able to bathe alone. Of him having to meld his schedule around mine to watch over me. Of our plans for a family - tentative at best - potentially sidelined for an indefinite period of time. I am so incredibly scared.

And for a change, it looks like I'll be spending a significant amount of time with doctors who won't ask for me to take my pants off.

25 Comments:

At 1:10 PM, Blogger MsPrufrock said...

They might ask you to take your pants off just to make you feel comfortable.

I cannot imagine what this must be like for you. My brother started having seizures as an infant, and luckily they stopped when he was 4 or 5. I found him in the midst of a grand mal once and that image has stayed with me.

I hope at some point they are able to find out how to solve this. I'm pleased that you have such a great husband to help you through it.

 
At 2:12 PM, Blogger daysgoby said...

I've had a 'seizure disorder' (polite term for we don't know why you keep having these but can't call you epileptic) since I was sixteen. The fading out of sound is the most bone-chilling thing - like you're in a tunnel. I hope your doctors can give you peace.

I did have two kids while taking Tegretol. Both fine - the doctor just had me take a whack of folic acid before and during my pregnancy. I can give you the details if you'd like.

Your husband sounds lovely.

 
At 2:23 PM, Blogger Cricket said...

Okay, tube socks pale in comparison.

I am so sorry that this is happening and that it is putting such a kink in your immediate plans.

Michael is such good support that you sound so graceful about it all.

Bipolar and seizure disorders overlap in the brain and some meds work for both. Those meds are the ones that tend to work for me. I understand so many of the sensations you so aptly described, except I tend toward the real Tourettes and yell a lot.

 
At 2:25 PM, Blogger Cricket said...

hahaha the next word verification sequence is actually....

fixlaw

[sorry]

 
At 2:37 PM, Blogger Donna said...

April, I am so sorry you are going through this right now, on top of everything else. I had a grand mal seizure when I was 18, then another 2 years later. No diagnosis of epilepsy and I've not had another one since, but a few smaller ones. I know exactly what you mean about showering and driving...I'm so glad you have such a wonderful support system. Take care.

 
At 2:55 PM, Blogger Larisa said...

Wow. First, your husband sounds amazing and wonderful.

I can't imagine how scary and overwhelming this situation must be for you. I will keep you in my thoughts.

 
At 5:08 PM, Anonymous Jen said...

I'm so sorry, sweetie. You're in my thoughts.

 
At 5:28 PM, Anonymous thalia said...

I'm sure Michael doesn't mind taking care of you from time to time, don't worry about that. It's what you both do for each other. This must be incredibly stressful, April, I'm so sorry. I will keep my fingers crossed that they can find some kind of answer.

 
At 5:47 PM, Blogger Spanglish said...

I've been meaning to check out your site because I like the responses you give on other people's site... but today is the first I have actually come on over.

I wish you didn't have so much going on. Your husband is beautiful.

Thank you for your kind words on my site.

 
At 6:39 PM, Anonymous Jenn said...

I wish there was something I could say to make it better. You can take your pants off for me if it makes you feel better.

 
At 8:25 PM, Blogger Toni said...

Ugh...double ugh...I'm so sorry April...I hope that whatever is causing it turns out to be something simply fixed. I'm not all that well versed in seizures...let us know what the doctors say. I'll be thinking positive thoughts!!

 
At 8:48 PM, Anonymous Dooneybug said...

Wow. Crazy all the stuff you've been through and now are having to re-live. I hope that you can get things under control soon. Take care!

 
At 11:14 PM, Blogger Vacant Uterus said...

Oh April, how scary! Not knowing must be so frightening.

Your husband is a gem and it sounds like he likes taking care of you. Which is how it should be. I hope things get better soon and that the answer turns out to be simple.

 
At 12:20 AM, Blogger Cass said...

What everyone else said:
- Your husband sounds like an absolute gem. The thing with your hands? So. Sweet.
- Yes, this is scary. I can't even imagine how much. But you have a strong support system around you (your husband, obviously, but the rest of us, too) and that's got to count for something.
- Feel free to take your pants off anytime you want, just for kicks.

And one more thing: I've never read the details of this part of her story, but Tess (http://tesspeak.typepad.com/) has epilepsy and has 4 kids (one + triplets). I know yours isn't epilepsy, but maybe there's something you can get from her story anyway. (That's probably really ignorant of me. I really have no idea what the differences are between what's going on with you and what gets called "epilepsy". I am so sorry you have to find out.)

Thinking of you, April.

 
At 3:39 AM, Blogger MC said...

What a gorgeous husband. I'm sorry that you are going through this. I hope the DRs can come up with some answers for you.

 
At 7:40 AM, Anonymous T said...

Aw, of course your husband will do all that for you - you'd do it for him. Lovely!

My Mom had 'issues' - I don't know if they were termed seizures, but she couldn't drive (I had the joy of driving her around for 4 months), etc. - she did all the tests and wore a stress monitor for a month - they came up with nothing and she's not had one since. Very strange! I hope yours can be identified and treated. Thinking of you.

 
At 9:56 AM, Blogger chris said...

I'm sorry. How scary for you and your husband.

 
At 10:54 AM, Anonymous Lori said...

I'm so sorry you are going through this - as if boring ol' infertility wasn't enough to deal with. I hope you're able to get some answers (good ones at that) quickly.
It sounds like you've got a wonderful partner who will take good care of you. And just remember, you wouldn't think twice if the roles were reversed. That always makes me feel a bit better when I feel things have been a bit one-way for a spell.
You're in my thoughts.

 
At 11:35 AM, Anonymous mm said...

So sorry for this fresh Hell you're going through. Your husband sounds amazing, as do you. Taking your pants off once in a while will not hurt anyone and just may make things feel a little more familiar. I say go for it.

 
At 12:20 PM, Blogger Blue said...

Oh Sweetheart, I am so sorry. I have no idea what it must feel like for you. How scary and discouraging.
Your husband sounds like an absolute angel (LOVE the story of how you met and married).
I hope you find your answers quickly and they are able to put a stop to the seizures.
Thinking of you!

 
At 12:59 PM, Blogger Spit said...

Wow
My little sister has epilepsy, too. She didn't have her first seizure until her late 20's but, like you, had strange episodes her whole life (that she never told anyone about).
Since you read my blog, you know she is expecting. She didn't think she'd be able to. I hope you will find a way, too.

 
At 1:04 PM, Anonymous Leggy said...

I'm so sorry you have to go through this on top of everything else. I've had some health issues of late that have postponed our next IVF, so I can sort of relate (although it doesn't interfere with daily living, which is a hard pill for you to swallow on top of everything else.)
Do you read Tess's blog? (http://tesspeak.typepad.com) She has epilepsy as a result of an accident as a kid and she's had 2 successful IVFs. Maybe you could send her a note and see if she has any advice re: IF treatments. Not sure if it would help, but she's very nice and it might just be nice to connect with someone else who has similar health issues.

 
At 4:44 PM, Blogger Nico said...

I can't imagine how scary this must be for you, on all levels. It is so unfair that you have all this on your plate. I'm so sorry. And let me add to the chorus of folks saying how amazing Michael sounds. A definite keeper!

 
At 5:28 PM, Anonymous Wavery said...

What a giant weight this must be for you. It's not at all the same thing, but not being able to rely on your body (mine is neck spasms and of course we share the IF woes) is a large burden. I'm glad you've got a support system in place.

 
At 2:51 AM, Blogger Coloratura said...

interesting... my husband has described very similar episodes... and they do think it's epilepsy, or a very mild version of it... he hasn't had one in quite some time though... I hope you are okay...

 

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