From the Top

I have always jumped feet first into a new endeavor.

It’s ingrained in my personality, something my mother will tell you I’ve always done since I was a baby. I wouldn’t say that I was willful, but it was very hard for her to stop me once I made my mind up about something.

I’ve hit some rough patches in my early adulthood that made me slightly reticent, but I still hurtle into things once I decide it’s something I want to do.

Some examples: moving to Georgia from Connecticut; meeting my future husband; going to graduate school; starting this blog: these are all things that I jumped into because it seemed like a good idea and darn-it, I’m doing this thing.

One of the rough patches that slowed me w-a-a-a-a-a-y down was my MS diagnosis in the fall of 2013. I was in the middle of graduate school and found that it set me back several years while I emotionally (and physically) recovered from the whole experience.

The Diagnosis Tale

In December 2012, I had my first MS flare-up. I didn’t know it at the time, but when I woke up one morning with a spot in my vision, I assumed that it was an aura for a migraine. It didn’t go away and I never got a headache. Several ophthalmologist visits later it mysteriously disappeared mid-January and the ophthalmologists shook their heads and shrugged. Random weirdness. Bodies do this sort of stuff when stressed (graduate school is stressful).

I went to London for the first time in May 2013. Coming back to London on the train from Cambridge, I noticed a numbness in my right earlobe. The sort of numbness you get when you are frozen and while England is cold, it is not that cold. The numbness worked its way down my right arm to my fingertips over the next 24 hours. Scary, especially abroad, but there was little I could do about it. I just assumed I was really cold and worked around it by ignoring it.

When I got home the numbness receded within three weeks. By July, the spot returned to my vision and I noticed a weird vibrating sensation every time I bent over.  I went to my General Practitioner and after reading up on my symptoms on WebMD I asked them if I have MS. They said: “Nah, that doesn’t sound like the symptoms. They would be more pronounced, I think.”

I listen to them because who really wants to admit to such a diagnosis? I clung to the hope that my body was just struggling with graduate school stress in a very bad way. I overextended myself so much that it manifested in really frightening ways.

A few weeks later, I had to go to the Emergency Room when I lost vision in both eyes while teaching a summer course. MRI ordered for brain and optic nerves. Eyesight returns enough so I can drive again and I wait for my results.

I get a frantic call from the on-call ophthalmologist that ordered the MRI saying that my Optic Nerve is so inflamed that I need to be hospitalized immediately, lest I lose my eyesight permanently. I check in for 4 days and begin a high-dose regimen of steroids. I get more MRIs, spinal taps, and x-rays.

When I go home, I have traumatic dreams of nurses coming into the room to wake me up to dose me with steroids and check my blood sugar levels.

The hospital neurologist narrows the diagnosis down to NMO and MS. I say I would rather have MS and he argues that I wouldn’t want that.

Well. If I had my ultimate choice I would rather have neither and walk out of there with a clean bill of health. Because that wasn’t a possibility, he schedules me to see the top MS doctor (affiliated with the hospital, thankfully) in the Southeastern region to discuss my results and wishes me well.

Several weeks later and I am in my neurologist’s office and he is confirming that I have MS. He considers it a benign form of RRMS because I only have a few, small brain lesions. I break down crying because I am relieved it isn’t NMO and because its a less severe form of MS.

We decide that I am going to try and manage my MS with lifestyle and stress relief changes. I slip into denial. I can’t have MS. I feel fine, just slightly tired.

Two flare-ups later and it is time to consider drug-management therapy. I go on Copaxone for a while until my body rejects the frequent injections. We switch over to Tecfidera and after the initial month of painful stomach cramps, it goes well and I don’t experience another flare-up until I go off of it to get pregnant.

Where I am at Today

Pregnancy and breastfeeding is a known natural suppressant of flare-ups. Once my son, Jai, hit 9 months, I had a minor bout of optic neuritis. I went in for my first MRI in over a year to see what was going on with my lesions and they found that they disappeared. Shortly thereafter my eyesight returned but I realized that I needed to make some changes.

The unfortunate reality is that I would be off medication for a while longer while I continued to breastfeed Jai, but I would have absolutely no protection in case my body decided to attack itself again. I know the recommendation from my neurologist: stop breastfeeding and get back on the medication. Being the hippie that I am, I did not want to stop breastfeeding before either of us were ready and I certainly did not want the MS to take that option away from me.

MS is going to take a lot from me, but prematurely giving up breastfeeding my son was not going to be one of them.

I was also struggling with my energy levels and keeping up with a creeping 9-month-old is near impossible even with all the sleep in the world. Throwing MS into the mix makes for plenty of days where I lie on the nursery floor and let him crawl around me. I can only drink so much coffee in the day and you’re only supposed to drink a certain amount when breastfeeding…so I recognized that changes were going to need to be made.

I started thinking through a lot of things. I remembered that when I was a vegan (before my diagnosis, but in between my first couple flare-ups) that I had some of the highest-periods of natural energy that I’ve experienced. I have heard plenty of times of people with little to no energy finding a massive difference when they switched to a solely plant-based diet.

This was something to explore because why not? If I ate a clean, vegan diet while Jai was beginning to eat more and more solids, at the very least I won’t have to worry about his vegetable and nutrient intake. I would be exposing him to various vegetables and hopefully get him interested in eating healthy rather than just junk food. Modeling clean, healthy eating habits while also getting into better shape (a personal goal for a while).

NOTE: I am not going to make Jai adhere to the vegan diet. Ash has already said he plans to “cheat” on the diet by getting various foods and I told him to share with Jai. I want Jai to be exposed to all sorts of things, but when I am making lunch and dinner for the family it will be primarily vegan. What he eats out and about or at friend’s houses is fine with me.

Because MS is an inflammatory disease and because all autoimmune diseases are connected by way of attacking the body – I thought about additionally adopting an anti-inflammatory diet. So no alcohol, gluten, fried foods, unnatural additives. I will then increase my exercise and activity to help keep me moving and boost my metabolism.

I would be cutting a lot out of my diet, but I thought if I can try to do this for 6 months (out of my entire lifetime) and I notice a difference, then it might be worth it. If it doesn’t make a difference, I would start bringing foods back into my diet and see how I react to it and make adjustments. I wouldn’t count it as a failure because I figured I might lose some weight from the better eating habits and exercise AND Jai would be on the path of minimizing childhood obesity (it’s a bit of a fear for me).

Cutting things all at once would be too much so I would have to do this slowly. Each week I would remove one of the “bad” things and see how I did before moving onto the next week. I wanted to cut sugarcane out and I know that’s going to be the hardest week for me because I LOVE me some sugar. I don’t want to be super strict, so if I have no options or I am absolutely craving something, I will allow myself to indulge a little bit.

This isn’t a prison sentence and there’s no reason to resent the changes I am making.

Schedule of how I will alter my diet for the next 6 months (numbers = weeks):

  1. Alcohol (except kombucha)
  2. Cane sugar
  3. Red meat (I consider this beef & pork)
  4. Fried foods (deep-fried, not pan-fried)
  5. Dairy (milk, eggs, etc)
  6. All other meats
  7. Gluten
  8. Preservatives

So starting next week I will remove all alcohol from my diet. That’s fairly easy because I don’t drink all that much of it. I love a glass of red wine here and there, but it’s not something I am going to miss. This blog is going to track how each week goes: what I am dropping, how I am feeling, what I am hoping will happen by removing it, and how I will substitute it (if necessary). I will also blog about some research I’ve done and what differences they might make for me.

Wish me luck.


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