Day +830 (for those who always wondered what the heck these numbers are, it's how many days since I got my stem cells back. It's like being a toddler again, except we can't figure out when to stop using days and months instead of years to count our age. Three. I think at three years)
I said I would tell you how I'm faring with this new way of eating for my disease. I can report two truths:
1) I feel better and
b) I'm writing this post because it's an excuse to get out of food prep.
There seems to be a lot of food prep.
I hate food prep.
I have rewritten this post a few times because when you're talking about food, there is so much to talk about that does not include the actual food. This may turn into a two parter. But before I continue, allow me to make a few points to preempt your queries about using diet to control MS:
1) I am not a doctor. I am not suggesting that nutritional changes means we can throw out our mobility devices or stop our current medications or therapies. I absolutely do not advocate or suggest that you should toss your DMD or tell your doctor you're going to do this instead of anything she suggests. I have entered into this as a supplement to the post-HSCT maintenance regimen. This is how I'm trying to improve my cog fog, balance/mobility, fatigue and other MShittiness I battle in summer heat and quarantines.
2) No, I do NOT believe treating this disease with diet is a hoax and a waste of time. How can we deny that food has an effect on the body? If we learn that simply changing our diet could improve our sitch, why wouldn't we try it? We already tried needles, infusions, pills, and chemotherapy.
Anyone who could have a fatal reaction to a nibble of peanut butter. Anyone who gets a rash after eating a salad with ranch dressing. Anyone who can't breathe after a bite of egg for breakfast. All of these people know how food can affect the way we function. We know how we feel after week 3 of quarantine and we're stuffing 12 pizza boxes into a dark trash bag. We know how we feel after we spend 3 days drinking more water and eating healthy.
3) No one has sold me anything. I have not paid for consultations. I have not purchased supplements with a brand name that claims to have a proprietary secret to curing my MS. I have purchased food from a grocery store just like I did before I changed to these protocols and guidelines. I went to my local library (pre-pandemic) and got the book. I went online and downloaded--for free--research and even a recipe book.
So, when you're ready to do the research, remember to use your filter and read the science before the opinions. I'm not going to call out groups of people or troll the trolls. But if you're at the same place I am now or beginning your research, I am going to warn you that there are many nay sayers "out there" about using food to help or--dare I say--heal MS symptoms.
[insert emoji of that female shrugging her shoulders]
So, now I've said my peace about the validity of eating for my disease. I've asked repeatedly that you do some reading. I've warned you there's a lot of food prep. I've reminded you I'm not endorsing any specific diet and not claiming that any of this will cure your MS. Now let's get to the juicy part.
Is it working? Yes.
But first, let's talk about getting here.
My new philosophy is "if it's not good for me, it's bad for me"
If you are post-HSCT or still using a DMD, you have already been through the mental and physical rigors of the battle with MS. So, you'll be ready for this. I'm not going to lie: If you're like me and like fast and convenient, this is going to hurt a little. I should point out that I may be an anomaly. I know many MSers who made these changes to their diet and exercise and had no problems. That is not me.
We're in a pandemic. It's summer. We're in phases 3 and 4 of opening back up. Our kids are restless. We can't take that vacation. So why in the hell (sorry, Mom) did I decide it's a good time to completely change my eating habits? That's not a rhetorical question. I mean, I can't remember why I decided to do this now.
The most difficult part of the changes I'm trying to make is creating better habits. Rather, breaking bad habits. I am eliminating many of my favorite foods. Foods I've eaten daily for 46 years. Foods I used to reward myself. Foods I used to comfort myself. Many of you can probably relate when I admit that on some days, fighting MS symptoms is not enough of a motivator to miss out on the ribs my husband spent the day making or having a thick hot dog bun at the bbq. I found that being pregnant is the only time change came easy as pie.
[OMG, pie!]
The truth is, I have noticed a significant difference in my days when I'm eating clean. I have not yet awakened to renewed strength or energy, but I have opened my eyes in the morning after I cheated on my diet and felt awful. If I eat a bagel with cream cheese my voice wavers, my thinking gets foggy and it feels like a boa constrictor is squeezing me around my chest.
So, about the specific food part: My plan puts together foods that work for my specific immune deficiencies*. I've done pretty well cleaning out the cabinets and cleaning out my system down to the cellular level. In a nutshell, I eat 9 cups of leafy greens, sulfury and colored vegetables a day. I add a cup of berries and a few servings per week of game meat or fish. I cut nearly all red meat, and I get my fat from coconut milk and avocado.
[insert record scratch sound effect]
That's a lot, I know.
I have found that juicing and making smoothies helps. I also don't start eating until noon every day and try to get all of this in two meals before 7 p.m. I have given myself a break from the grocery store (I kind of was anyway since the pandemic) and rerouted grocery funds into a weekly delivery of ugly produce that didn't make it into the big box grocer. I also planned my vegetable garden around what I can have (of course, the deer and rabbits had different plans for my garden).
I will do better getting more specific about how I eat in the next couple of posts. But this is the take away:
I feel good when I stick to it. It's summertime, so any MSer knows that the heat will bring out the worst of the symptoms. But since HSCT, the heat no longer stops me in my tracks. Do you remember 2 years ago when I hiked all day just 4 months after the transplant? I'm still keeping up with it. The girls and I took a couple of bike trip on the Cape this month. I made it the day with no issues (except 2 overly tired girls).
If I keep this up, I may make food prep a sport.
More later.
*That is to say, I'm following the general rules of The Wahl's Protocol and The Best Bet diet. The first was created by by MSer Dr. Terry Wahl, a doctor from Iowa. The Best Bet diet was created by Ashton Embry, PhD. to treat his then teenage son now award winning filmmaker, Matt Embry.
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