Sunday, February 08, 2009

What a difference a (good doctor) a day makes

I've been a little quiet here lately as I fell into a lull. I had no major appointments the week of January 26th so it was nice to just relax a bit. Joe went out of town and his parents came in for a few days to keep me and Ava company. Joe came home, his parents left, my mom arrived - just in time for hell week!

Hell week - February 2nd to the 5th. Five appointments with members of the medical community. We dived in on Monday morning by revisiting the neurology practice where I was first seen back in December. This time, though, we were scheduled to see their MS specialist. I'm still not sure why we weren't referred to him immediately following my diagnosis, rather than having me waste my time with doctor #1 and having him waste his time with me. Doctor #2 was like day to Doctor #1's night. He didn't wear a white lab coat, he didn't sit far away from me. He walked in and was cheery, sat down on the swivel chair and wheeled it closer to us. He was relaxed and friendly and funny. We laughed about the book on outhouses he had on his shelf. Yes, outhouses. Something about another patient giving it to him. He made me feel very much at ease, even though I wasn't sure what to expect from this appointment.

The month of January was a very, very stressful time for all of us as we didn't know the first thing about my case. We explained this to doctor #2 and he immediately said, "So, you'd like some information!" and promptly opened his laptop and went to work pulling up my MRI images. He showed us the lesions, explained that the brain lesions were most likely silent as all my symptoms were indicative of a spinal cord lesion (the one on my cervical spine) and that the lesions on my brain were very small, the one on my spine was larger. I pointed out something below the spinal lesion and he wondered about it, so called the radiologist at WakeMed and they talked about it right then and there. Turns out it was nothing to be concerned about, but at least I didn't have to wait another week to find that out.

I told him our desire to have another baby and before I could finish my sentence, he said, "Have children. Have as many as you want." What a difference from Doctor #1 who said, "Let's discuss children if it comes to that," and then promptly forgot to mention it in the following appointment.

He did discuss medications, giving me his choice for the one I should be on (which was different from the first doctor and which would differ from the third doctor we would see). He said all neurologists will have their preferences for medication. There's no "one is better than the other" - they're all very similar and do similar things, so it comes down to a personal preference: a shot a day, every other or once a week; some side effects or none. The choice, ultimately, is ours.

I am increasingly frustrated, however, with doctors in the Western field who very quickly dismiss other ideas that have been floating around in the world. This was evident when I mentioned diet. There are several MS diets out in the world, two books (three if you count Montel Williams' book which is more a diet for overall health, even though he's had MS since 1999). One book talks about a very low-fat diet, the others are more about food intolerances and locating what foods your body can't handle (the culprits being gluten, dairy, eggs, legumes, sugar and saturated fats). I'm not totally convinced that there's not some validity in these diets and am willing to try some, but it's frustrating when the doctors dismiss ideas other than the ones put forth by drug companies. I understand that there is science behind prescription drugs, but there's a lot more than that too. Doctor #2 summed it up nicely when he said, "There's a little bit of science, a whole lot of marketing, some voodoo and some bullshit." Finally, a doctor who does buy into all the marketing of a drug. But wait. He does, in a way, I suppose. He dismissed the diets by saying to "eat a healthy diet." The diets I've been talking about are healthy but they're limiting. Doesn't mean they're bad for you or have bad side effects. It would be nice to be told sometime that while there isn't much science for these diets to be considered cures or even just considered in the mainstream, they won't hurt, so go ahead and try them. I'm looking for acceptance and I'm looking for something to do, something I can in control of. I feel completely helpless most of the time. There are no numbers to check with blood draws that will show me if my MS is getting better or worse; they only do MRIs once a year and that's a long time to wait to see if the lesions are shrinking, getting worse or finding new friends. I want some control other than giving myself a shot once a day.

We left this doctor feeling refreshed and energized, like we'd been given our lives back. There were still doubts and questions and a little uncertainty as we moved forward, but the big cloud that had been hovering above us had started to move away.

Tuesday I went to the acupuncturist. More on that next week after I actually have the treatment. The first appointment was a consultations to meet with the doctor and decide if he could help me or not. I have three appointments scheduled over the next two weeks. I'm excited to actually be able to do something to myself that will help my body.

On Wednesday, armed with what would turn out to be faulty Google directions, we left for UNC-Chapel Hill to meet with MS specialist #2, otherwise known as doctor #3. This doctor was female and as we found out when we met her, from Croatia. That has nothing to do with anything; I just found it interesting as I had never met anyone from Croatia before. She was nice but not overly; very smart but not so in touch with the human side of things. She did a quick exam, read my MRIs and confirmed the MS diagnosis. We mentioned children and she immediately said to go on medications (she could write me a prescription right then if I wanted) and said to stop medication when I got pregnant. This differed greatly from what we'd heard before (medication takes 6 months to be effective and to be off medication for 1-3 months prior to conception). What to believe!? By this point, I was about done and knew I would not be returning to see her as my regular doctor. She didn't ask us about our plans (children could something we were considering in the next month but also something we didn't want to try for until next year); in my non-medical mind, such things should be taken into consideration when discussing long-term medication, but doctor #3 didn't take any interest in our plans. I asked her about diet and a pregnancy-related study I had read about and both were quickly dismissed: "Yes, I've heard of that before" as she waved her hand. Definitely not the attitude I want from a doctor I'm to see for the rest of my life. She was very interested, though, in my blood. As a newly diagnosed person with no medication use, she wanted my blood for research she was involved in. No problem - until I saw the TEN vials they were to fill! I did my part for research and then we were on our way home.

We still liked doctor #2 but I was a little upset by doctor #3's attitude about things. I find myself quickly jumping on the path of self-doubt and questioning. #2 said to have children, #3 said to be on medication right now. What to do? My comfort in all of this is Joe. He's able to read past emotion and extract information. He also seems to hear things in appointments that I don't. I become upset (if not visibly so) when I hear something I perceive as bad. Doctor #3 said she was concerned about the lesion in my neck. Rather than think logically about this, in that the lesion on my neck is bigger than the ones on my brain, I immediately jump to the word "concern" and become nervous and scared. Sure, all the lesions are worthy of concern - they're not supposed to be there. If not for the first appointment of the week, I would have come out of the second full of dread and uncertainty about the future if I didn't go on medication right away. The truth is everyone newly diagnosed should be on medication but taking 9 months to have a baby is not going to do me serious harm - at least we can hope I'll be ok. Pregnancy tends to treat all MS patients very well and because of this, researchers are studying the effects of hormones in treating MS. I need to focus on the positive aspects of pregnancy on the MS body and not be so hung up on single words and their wide spectrum of interpretations.

Thursday brought us to the high-risk obstetrician at WakeMed for what they call a preconception consultation. I was a little worried that we'd be wasting his time but it turned out to be a very valuable appointment. The staff was so friendly and had us wait for less than 10 minutes. The doctor was very nice and listened to me babble on for what seemed like a long time. I think something I'm most glad about right now is that I don't have any other appointments to attend where someone will ask me to "describe my symptoms." This was the first doctor who didn't dismiss when when I asked about some non-routine, not widely accepted practice. My sister forwarded me some information about women with MS doing better post-pregnancy and post-surgery if they are giving units of blood or plasma after the event. This doctor said he had never heard of that but was interested. He said it wouldn't hurt me to donate blood to myself (1 unit for natural delivery, 2 units if I require a c-section), told me when to donate blood to myself (later in the pregnancy) and said he would inform my regular doctor about this also. I explained my feeling of wanting to try things that might help me. I don't expect a unit of blood to cure me, but if it might help, and won't hurt me, what's the harm in trying.

We finished hell week exhausted, having spent the better part of the week (or so it felt) sitting the car, sitting in waiting rooms, sitting in exam rooms, rehashing my symptoms and asking the same questions over and over. But we survived, and with it the hope that we can bring another baby into our family. We came out armed with more knowledge than we had a week ago and a new doctor who we both enjoyed talking with. That's not to say there haven't been tears this week. While we know more, I'm still full of uncertainty. On one hand are the platform drugs that all neurologists will recommend. One the other are many books and articles describing how MS patients seemingly stopped or significantly slowed the disease by changing their diet. I tend to be a little obsessive with some things and this is one of them. Should I cut out eggs from my diet? I've already cut back drastically on the amount of dairy and gluten in my diet, but what about eggs? What about sugar? Should I not eat that slice of cake because it has sugar? I want something to believe in and something to do - I want to be in control but I know that being in control obsessively is not healthy.

I'm not in denial, but perhaps I'm in a space between denial and acceptance. I know I have MS but perhaps I haven't fully accepted that.

But how do you accept something? How is acceptance not like settling for something less-than-idea because something better didn't come along? I feel as though I'm at a crossroads right now. Life as I knew it is behind me. To my left is a road of compulsion and wanting to be in control; to my right is life that needs living and acceptance. I know I need to turn right but I don't know how to. How do I do that?

2 comments:

nikole sarvay said...

Oh, Dale - I can't wait to see you next weekend so I can give you a big hug. What a long couple of weeks you have had. I can see why you would be completely and utterly exhausted.

First, I am SO grateful that you have found a doctor that you feel comfortable with. SO grateful. And that you have Joe as your advocate and support. I'm glad that you have seen several doctors in the area so that you could choose which one would best meet your needs.

I too share you frustration with Western doctors not looking at a person or disease in a holistic way. This has been my experience too, and it is a really hard spot to be in when you firmly believe that there are other options that can help you (or at least that is how I have felt). I experienced that with my infertility/miscarriages and also with my own neuromuscular disease. Other things I was trying - like diet changes and acupuncture - were totally dismissed. I found that I just had to do my own research, rely on the expertise of the other more holistic care providers, and to try trial and error to figure out what helped me the most. The diet thing particularly frustrated me, because it is something so tangible that I could do to feel more in control with things, yet I didn't really get a lot of support for this (except from my acupuncturist). And through experimentation and observation, I *have* figured out diet changes that do help, and it makes me feel so much more empowered to be able to control things just a little bit. Anyhow, I agree with you that this is one of the biggest ways that Western medicine falls short - in all areas - is because so often, the person is not looked at as a whole person - a person who has power to influence his or her situation - and instead is just seen as the host to "the problem."

I know you may feel overwhelmed right now, but I believe that your curiosity and determination will serve you well in the long term. Give yourself time, and you will begin to understand and learn what helps *you* and you will be able to use this information to your advantage. What helps you may not be the same as what helps others. Though you may feel obsessed and overwhelmed right now, I suspect that this will lessen as time goes on and you continue to adjust to your new reality. I know you may not have another MRI for a year, but my gut tells me that you will find other ways to gauge how things are working out.

Goodness, I feel like I am rambling on.

What I really want to say is that I believe in your strength - in the power that lies within you - in the strength of your body and the strength of your mind, and in the strength of your will. You are an amazing woman. You will not let this disease beat you. You will carry on, you will live, you will be strong and healthy.

You inspire me each and every day.

Much love to you, my friend.

epschleichert said...

Hi Girlfriend,
Glad to read about your week and what you found out which sounds extremely hopeful, all in all.
Of course you want to be in control and of course this throws that out of whack. But maybe the acceptance can come with a measure of still being in control - seems to me the diet and the alternative ways of approaching this are bound to be positive in the long run, no?

I admire your plowing on with all of this and know you've got the spunk and good-ol' guts to find the best solutions to the dilemmas you're facing.
Love to you and the family, Libby