Sunday, January 11, 2009

Rock bottom and being open

So, I hit rock bottom this weekend. I'm not sure if I hit *the* rock bottom or one of the many levels of rock bottom, but I hit hard regardless of what I hit. There have been many tears since we first drove to the Emergency Room two weeks ago, but these tears were very different.

These tears were unstoppable. They left me breathless, drained - and very puffy-faced in the morning. They started on the drive to dinner on Friday after the Neurology appointment that me feeling as though I'd been punched in the stomach, again. And I cried, and cried, and sobbed. Lucky for me, it's been an emotional two weeks so I was able to salvage some used tissues in my bag for a repeat performance. I calmed down a bit while Joe ran into Panera to grab us some dinner. I'm not sure why, but paging through the drug information books we were given had a way of soothing me. Perhaps because the drugs will be what ultimately helps me fight MS; perhaps because I could look at them as just paper and words and ignore the emotion bouncing around my head. For a few minutes, I was calmer.

Rock bottom crept up again on the drive home and subsided a bit while we told my Mom of the doctor's visit, where the prevailing emotion was anger and frustration and not fear or hurt. And after we sat still for a while, I hit a low once more and the flood gates opened. During these moments I questioned what I'm sure everyone questions at some point in their life: Why me? I didn't make a wrong choice. I take care of myself (most days; I won't lie and say I'm a fitness or health fanatic, but I know how to eat and exercise to stay fit and healthy). I'm young. I have a baby to raise. Why me? I know the doctors can't answer that, but that doesn't stop me from asking every now and then.

I know a lot of things that don't make these questions suddenly clearly answered or go away. I know I am not dying. I know I don't have cancer. I know the likelihood is high that I'll live a normal, healthy life. I know there were worse things the doctor could have diagnosed. I know there are people worse off than me in their current health conditions. I know all of these things. I know them ten times over. Unfortunately, as many who have walked in shoes similar to these, knowing all of these things and more does not make your feelings magically silent. I wish they would. I am grateful for the fact that I am walking normally now with little to show for the fact that I couldn't walk properly last week. I'm grateful that I don't have to have surgery to remove a tumor on my neck (one of the diagnoses we faced for a while) and I'm grateful that I don't have to undergo chemotherapy or radiation. I'm grateful for all of these things. I truly am. But being grateful for something doesn't mean I have to like a lesser sentence.

I became more hateful towards MS this weekend. I hate that I have MS. I hate that my husband now has to think about MS everyday. I hate that my daughter will grow up and have to say, "My mom has MS." I hate that MS took away hot tubs. I hate MS took away soaking in a hot bath. I hate that MS could strike me at any moment without warning. I hate that I have to think about every.single.action I take so that I don't get stressed. I hate that a part of my living has been taken away. I hate that I can't just wake up, make breakfast, get dressed and head out for the day. I have to remember to give myself an injection before I leave and while I'm out and about, I need to not get pissed off at a bad driver or a slow line at a store run by an incompetent clerk. I know that doesn't sound so bad, but it's something that so many people can just DO and not think twice about. Sure, we should all live a more calmer, less angry life, but I've been put on the fast track to that life and if I don't obey the rules (I didn't sign up for, mind you), my health could be in jeopardy. I could end up with more lesions on my brain.

I have five lesions on my brain. Five fucking lesions. I'm scared. Ok. I said it with foul language - I don't have much of a sailor's tongue, but it's coming out now. Did I mention that the brilliant doctor we saw the other day (and I'm not being sarcastic: I'm sure he is a wonderful doctor, who is very knowledgeable and understands the human nervous system more than many) still has not shown me my scans. I had 3 MRIs from which they determined that I have MS. I haven't seen a single one. I don't know what the five lesions look like. I don't know where they are. I don't know if they're big or small. That scares the shit out of me and makes me so mad. I have things on my brain that don't belong there and I don't even know what they look like. I asked the doctor if we could see the images and he said we would have to call the hospital to request a CD. That made me mad too. The least I should have gotten for sitting in the MRI chamber for an hour and a half was a complimentary CD.

I hit the hard place again when my Mom left on Saturday morning. Joe and I sat and cried (I sobbed, actually) while Ava was napping. I know I've been in a state of shock the past few weeks, not quite denial, but disbelief that it's all happening. Visiting the doctor's office brought it all to the front - this is real, this is my life with a disease.

I did alright until later that evening when I was nursing Ava at 10pm. I realized that in trying to wean her a little, I'd gone a little too far and would be quite sore in the morning. So, I slowly pulled the sleeping baby from bed and offered her more milk, which she gobbled up quickly. MS brings having children to a whole new level. And that pisses me off more than anything at the moment.

Joe and I had decided we might start trying for #2 later in 2009. Then 2008 ended and all those plans went up in flames. Now, instead of having another baby being dependent on whether we wanted one, could afford one and whether the sperm met the egg, we have so much more to think about.

* will the drugs I ultimately choose cause harm to a fetus?
* what will happen to me if I go off the drugs for the 10 months while carrying a baby?
* will I be able to nurse while on the drugs or will my baby have to be formula-fed?
* one of the drugs says it's ok to be on while pregnant; how do they know damage won't rear its ugly head until the baby is an adult? How do they know??
* will having a baby cause me to have a relapse 6 months later (as our doctor mentioned at the first appointment: MS often shows up 3-6 months post-childbirth and after busy holiday seasons)
* I've likely had MS for years and didn't know, so have already had a baby while I had MS. Can I make the choice to bring a baby into our lives knowing that I have this disease?

Joe and I moved to North Carolina so that the decision to stay home and raise a family wasn't dictated by our mortgage. I hate, hate, hate that this disease now dictates - to a large part - how big or how small our family becomes; it dictates whether or not Ava has a little sibling; it dictates whether or not I am ever able to be pregnant again or nurse a baby again; it dictates whether or not Joe could ever have a son (we all know that's a 50/50 chance and we already decided we wouldn't try for #3 boy if #2 were a girl, but still...). I know Joe and I are ultimately in charge of the decision we make, but for right now, the decision is infinitely more difficult than the first time around. Are we ready? Yes. Sperm, meet Egg. Hello baby. Three weeks ago I didn't even know what Rebif or Copaxone were; now they're joining us at the table and they come with their own opinions and attitudes. And I'm so mad about that. What was such a natural thing with Ava has become so artificial, so chemical, so out of our control. I feel a little like a sperm - floating around and around, hoping like hell that I bump into something soon. Something that I can cling to or crawl onto and walk again.

God grant me the serenity... Yes, I know the prayer. I have it on my bedside table. And I know in time I'll accept all of this as just how life will be from now on. For right now, though, I'm mad and angry and want to smash things. Yesterday I wanted to smash my hand through the window. I wanted to scratch my face until it bled. I wasn't going to do any of those things, but I was experiencing emotions unlike any I'd experienced before. They make you think crazy things, and I'm sure make people do crazy things. I know my limits - at least for the time being. All windows are in tact and the skin on my face is as dry as it was the day before (side-effect of steroids, I believe). But feeling these thoughts is part of whatever journey I've been thrown on. This trip didn't come with an itinerary or even a list of scheduled bathroom breaks. I'm on a ride I didn't sign up for and there's no jumping off. All I know is that it's throwing some pretty harsh things my way - and while others may be experiencing more serious health issues or life issues at the same time, they're not on my train. This is my journey, with my feeling and emotions, my anger, my hate. And that's ok. I know I'll see a light at the end of the tunnel sometime in the future, but I don't believe it walks towards me. I have to move towards it, and while I'm on this train, that means walking through some pretty horrible stuff along the way. I can't just change cars; I have to sit awhile in each until space in the next car opens up. Then I can move forward.


nikole said...

Oh, Dale. I'm so sorry that you are going through this. Where you are makes so much sense to me. But you're right, at least in my experience, that you have to move through all of these hard emotions so that you can get to a better place with all of this. You are working through so much right now - everything that you wrote about here. Not only your diagnosis, but the wondering of why, and the grief and anger and whole range of emotions that go along with such life changing news. And all of the other ways that your life and your future - how you had imagined it - have changed. It is so, so much. And it doesn't help that you don't even have all of the information you need to help you find your footing and move forward. I wish so badly that your doctors had shown you more compassion. Medicine isn't just about the science - it's about dealing with the entirety of a person. I hope you will find other ways to support your spirit as a compliment to the medical care. I am so grateful that you have this space to share your experience and that you are writing so honestly. I have seen the support that is around you - I hope you will continue to process your feelings and experiences in a way that allows those who love you to show you support. I feel like you will get to a brighter place with all of this. It will get easier as you adjust and work through all of these big and complicated emotions. But for now, know that there are so many of us who love you, who are here to witness your journey, who are here to walk beside you in the darkness.

Kelly said...

I am a friend of Nikole's via her blog. She referenced your blog in hers tonight and it brought me here. so I had to scroll down and do some speed reading to figure out what the story is. I somewhat randomly picked this post to comment to, so its funny that the other comment here is Nikole.
Anyway, from a total stranger, I am very very sorry for what you are going through. Please know that you will be in my prayers.
I really really admire your honesty and rawness. It probably doesn't seem like a big deal to you. But the kind of honesty you are showing is rare, and beautiful and so human and wonderful. Alot of people put on the "its OK" face either by habit or choice. But your f-word (which I really dig by the way) flingin' honesty allows other humans to really be touched by you.
I hope you find every bit of strength you need to deal with this. Its incredibly unfair and I'm angry for you, without even knowing you. But I'm confident from the vibe in my heart that you will make it through this like a champion.
I'm a really good cusser. I could be your personal cuss-at-idiots-in-traffic helper. =) It could be a hotline. You call 1800asshole and describe the situation and I, the operator waiting for your call, will cuss a blue streak for you. And you will laugh, cuz the stuff I throw together can be quite amusing. crisis averted.

sending you love across the internet and saying prayers for you, stranger-friend,


ps. the captcha thing you have to type before posting a comment...right "asisfu". I am a bit crazy, but this is what that says to me: as is, f you. this could be you talking to life, or to the disease, or whatever. cuz it is what it is. it sucks and its unfair. and so f'you MS! asisfu. ;)