introducing my new blog and it’s very own facebook page!

since i wrote last time i have been feeling great, i’ve had energy and i’ve been sleeping well, not stumbling and barely numb! could it be the completely plant-based diet i’ve been following? could it be that round of hi-dose IV steroids followed by an infusion of tysabri? yes. it could be any one of those or a combination of all those. i’ll take it, wherever it came from!

i started a new blog to document my kitchen endeavors and farm share adventures, i hope you all will check it out and share it if it’s something you like! http://whollyeats.wordpress.com/

an intro to my thoughts on food and MS

About a year and a half ago I started eliminating all animal products from my diet. I had been a vegetarian for about a year prior, but I decided to stop eating all dairy products and eggs as well. Not because I thought it would do something for my MS, but because I started paying attention to the way we were getting these foods and the way the animals we were getting these foods from were being treated. I read Kathy Freston’s book Veganist and I felt compelled to follow a vegan diet. (I do enjoy local honey though, so I am not a “real” vegan.) It only took two days to start feeling like something was going on with my body, I started feeling taller. I know that sounds odd, but that is the only way I can explain how different my body was feeling! Then I realized that some of the feeling in my legs had returned, they weren’t quite as numb! I had days of increased energy, my balance was a little more stable and my overall mood was better. I was convinced that I was going to “cure” all of my MS symptoms and wondered why no one had told me that this could help! Time went by and I continued with my vegan diet but I got a little lazy about it. Oreo’s are vegan. There are great meat substitutes that are vegan, they are easy and they are yummy, but they are packed with wheat gluten and I started to think that maybe I was becoming sensitive to it, so I started eliminating gluten from my diet as well. It is not easy and certainly not cheap to eat a vegan and gluten free diet. I had an awful time finding bread that was gluten free and egg free and I had really come to rely on a good old peanut butter sandwich as a standby when all else fails. For the first time I was finding it hard to stay true to my vegan ways. It was tough, I felt like my digestive system wanted me to stop eating wheat and it was really just an ethical thing to stay away from animal products. For some reason, I had lost sight of how good the vegan diet had made me feel, it might have had something to do with all of those oreos and PB&Js! I had started to have sluggish days again and eventually I ended up having a significant MS relapse that I talked about in a previous post. While going through the steroid treatment to treat the relapse, I foolishly indulged in a few slices of cake, which some how led to a few slices of cheese pizza and I’m talking a large few! I felt sorry for myself and I thought that this was a good way to “treat” the self-pity. It was NOT! Now that the MS relapse had subsided I could feel that what I was experiencing in my body was from the large amounts of sugar and the dairy that I had re-introduced. The sugar made me feel super speedy and then made me crash big time. Knowing that I had done that to myself felt awful! The cheese tasted great but the knot that it put in my stomach for days and the headaches and the crankiness and the blah didn’t come close to being worth it. Most awful was that I certainly wasn’t feeling taller anymore, and my skin looked terrible! My daughters even started to show some concern, like this was going to lead to something even more devastating! I don’t know for sure what happened first, did I get lazy and loose my passion for cruelty-free eating and thus ended up eating more convenient, less expensive foods that contributed to my MS relapse? Or did the relapse slowly build causing me to lose the will and the energy to prepare healthier foods? Either way, I am grateful for the whole experience because of the intense difference in the way that my body was feeling from day to day and really paying close attention to how it felt after I ate certain foods has made me realize that this is a big deal! This food thing isn’t just for us MS’ers, this is universal! Why is it so much cheaper and way more convenient to eat like shit?! And where did this idea come from that eating crappy foods was comforting?! Now I am yelling and getting a little stirred up about this. The simple truth is, I just want everyone who is feeling anything close to that lack of control I have felt over the past 5 years since being diagnosed with MS that you can do something. I want anyone experiencing that powerless urge to “treat yourself” to something because your disease has no cure, has an unknown origin and is unpredictable that you can do something. You can reward yourself with healthy, real food that isn’t overly processed. You can pay close attention to everything that you willingly put into your body. Maybe you will feel like you have a little more control. Maybe you won’t. But I bet if you try it for a short amount of time, even a week, you will feel a difference. Maybe you’ll feel a little taller too.

today I am feeling good

I don’t want to become one of those people who only have something to say when times are hard or when I’m not feeling well. I think that is how you let your MS become a hardship that defines you.  It isn’t that I mind or am unappreciative when one of the first things that people ask is “how are you feeling?”, I actually appreciate it quite a bit! But I don’t want that to be all that people think of when they think of Kate Hunter. I want to be a voice in the MS community, and amongst my family and friends, that shouts out about the ways I am taking control of my health and I want to blog about the days that are “good” and the things going on in my life that make me happy. I want to spend time talking about the things I am passionate about. I want to write about the positive things that my MS diagnosis has done for me. I’d like to share the crazy, yummy recipes that my 14 year old daughter and I come up with on the fly and post the pictures we take in the kitchen (lots of them) and how we want to help spread the word about this country needing a Food Revolution.

Before I had my first big relapse, (hard for me to call it that because for me it wasn’t a “re” anything. My MS did not come on slowly, it just hit me like a mac truck) I worked as a full-time paramedic, sometimes as many as 60 hours a week and I was technically a single mom with 3 kids. I had been dating my partner at that time for about 5 months. I suddenly went from being a very productive and social, self-supporting woman to someone who spent a lot of time fighting for disability benefits, withdrawing from friends and losing that drive to do something meaningful with her life. Sure I was a parent and that is meaningful, but it has honestly taken me these 5 years to stop feeling sorry for myself all of the time (I still have moments), awaken some sort of spiritual connection, and realize that even though I can’t entirely control how I am going to feel from one day to the next with this unpredictable disease, I can take care of myself the best ways that I know how and I can spend the time and energy that I have on teaching these things to my kids and to others. And even though I cannot get up everyday and go to “work”, I can get up every day, have and show gratitude and stay passionate about the things I believe in.

me and my daughters, Sunny and Hannah.

If just one person tells you that they enjoy reading your blog and another asks when you will pick it up again because it was helpful, it makes you think that maybe, when there is “time”, you will post in it again. And then when you realize it’s been more than just one or two people and that it was actually helpful for your own mind and soul, and you seem to have nothing but time, at least every 4 weeks while sitting in an infusion suite, you might as well give it another try.

So much has happened in my life since the last time I posted. Some of it MS related, some way too personal for a blog that isn’t anonymous, but all of it contributing to my feeling distracted and numb. Steady and optimistic, not entirely! I am going to attempt to get this going again, really for my sake more than thinking that anyone else is even paying attention. I am going to attempt to figure out how to post things in separate categories and not just write about MS, because it really is just a part of me, not the whole me. Maybe I can figure out an MS folder or chapter or section within my blog. For now though, I need to make the appearance of my blog a little less chaotic, and man those swirls and colorful designs were really distracting! So here is to a simpler design….

The end of April and most of May was rough. I had a pretty significant relapse of my MS. I had symptoms I hadn’t experienced before and the MS clinic that I go to was undergoing an expansion of their offices, a change of phone systems and new employees that didn’t seem to know the importance of getting MRI’s scheduled as quickly as possible so that treatment could begin. I know that I was probably not alone in my frustration of the system and that this change in how things work at my doctor’s office was not about me, that it wasn’t some personal vendetta created to make my life a little harder, but that, unfortunately is the way I am programmed to think. It’s always about me and it’s always personal! That of course is something I could talk about at another time, in another post, because it’s a significant character defect that I am beginning to address.

Anyway, after a prolonged wait for my MRI I discovered that I didn’t have any new lesions, no active or inflamed lesions but that I had somehow herniated C5-C6. Who knew? I am pretty much just ignoring that. But I did wonder if I didn’t have any new lesions, if nothing was active, then why was I having such an awful relapse? I guess it’s because that is the nature of relapsing-remitting MS. It relapses without warning, and you never know what the next day will be like. I did get my orders to do a 5 day high dose IV steroid infusion, and I made it through 3 days. My body had had enough. After a few days of swelling and heart palpations I started feeling great and now, here I am getting the maintenance infusion of Tysabri. I went to bed last night thinking I was going to postpone it to try to do things I thought were more important but I woke up knowing I had to come, and feeling extremely sorry for myself and honestly a little pathetic, I dragged my ass out of bed and drove the hour and half in the rain. As my time here is ending today, I am grateful for the strength I had to get here, the insurance I have to pay for my treatments and the fact that I may have MS but I have it in a time where there is so much being done as far as medical research and the options for treatment keep growing. It could always be worse.

March is MS Awareness Month

It’s been a little while since I’ve blogged and I plan to add at least a little everyday this month to one or more of my social media outlets to do my share of raising MS awareness.

I posted a link to a video on Facebook and Twitter that does a really good job of trying to explain what MS feels like, you can find it if you look to the Twitter feed over there on the right, or better yet, I will just post the link again! I found this video shortly after I was diagnosed in 2007 and it really helped to validate my symptoms. I find it helpful to know that I’m not the only one who feels this way.

While searching for this video I stumbled across a blog that had this great description of what MS feels like with some added humor. It made me laugh out loud but it’s also very accurate! For some reason I had a hard time adding it as a link so I have copied it and as the blogger who I found it from mentioned, it is written by an unknown source and I am copying it directly from a blog called “livingdaytodaywithmultiplesclerosis.blogspot.com”

What Multiple Sclerosis Feels Like

 

I posted this a very long time ago but after reading many blogs from Fellow MS’ers I decided to repost this. I love this!!!
I did not write this but it is a great explanation.When we say we can’t do something because we don’t feel well, put yourself in our shoes by using the examples of our symptoms below—

What You Can do To Understand Painful Heavy Legs… Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

Painful Feet… Put equal or unequal amounts of small pebbles in each shoe then take a walk.

Loss of Feeling in Hands and/or Arms… Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.

Loss of Feeling in Feet and/or Legs… Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.

TN (Trigeminal Neuralgia). ..Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw, preferably daily.

Uncontrollable Itching… Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

Tingling… Stick your finger in an electrical socket – preferably wet.

Tight Banded Feeling… Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day.

Shots… Fill one of our spare needles with saline solution and give yourself a shot every time we do our shot.

Side Effects From the Shot… Bang your head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

Trouble Lifting Arms… Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

Spasticity… Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

Poor Hearing/Buzzing in Ears…Put a bee in each ear and then put a plug in each one…bzzzzzzzzzzzzzzzzzz

Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.

Urgently Needing to Pee… We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

Bizarre and Inexplicable Sensations… Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.

Pins and Needles… Stab yourself repeatedly with needles all over your body or better yet….Get a large tattoo.

Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.

Fatigue… Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel.

Bowel Problems… Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there till tears appeared.

Burning Feeling… Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

Intention Tremor… Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky?

Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’s)… Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

Vision Problems (Optic Neuritis)… Smear vaseline on glasses and then wear them to read the newspaper.

Memory Issues… Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

Foot Drop… Wear one swim fin and take about a 1/2 mile walk.

Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting her/him asleep.

Fear… Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day.

Swallowing… Try swallowing the hottest chili pepper you can find.

Heat Intolerance or Feeling Hot When it’s Really Not… You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms – welcome to our world.

And Finally… After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

(Please note that I didn’t write this and don’t know who did)

to-sabri or not to-sabri? that is the question.

Today is the day that I am due for my Tysabri infusion. I didn’t make the appointment at my last visit because I thought I would wait until I had made the decision on whether or not to continue taking it. I have not come any closer to making that decision.

At my last nuero visit I was told that my most recent MRI showed that I had developed a new lesion in my right frontal lobe. That it wasn’t active at the time of the scan, but that it was there and that it was not there in the previous scan 6 months prior. My neurologist said why take the high risks of Tysabri if it isn’t working. That perhaps I should stop and try something new.

I really thought that Tysabri WAS working! I definitely feel a difference in my MS symptoms when I am freshly infused, compared to days like today when I am 4 weeks out. My fatigue isn’t quite as debilitating, in the warm months the heat doesn’t bother me as quickly. Even the numbness in my hands is less of a prominent quality of my life. I wonder if I will start falling again, if those maddening leg spasms will return with such frequencies. I almost feel like I don’t care if I have a new lesion, as long as I feel a little better!

MS really sucks. That whole relapsing-remitting thing. I have had remittance of a lot of the symptoms of my MS, but a lot of them stick around too. I just get used to them, and with Tysabri it really seemed to make that a little easier to do.

My choices for treatment are actually not “choices”, there is only one treatment that my neurologist says I am able to try. And it isn’t even FDA approved for the treatment of MS yet. Rituxan, or rituximab, is used for the treatment of RA, Non-Hodgkins Lymphoma, some forms of leukemia, and a couple other things I have never heard of. When I googled Rituxan and MS I actually came across an article that mentions my doctor in it. I think that makes me feel a bit better about it, but also has me wondering a bit if maybe she is being reimbursed somehow by the drug company to push it. I guess either way it doesn’t really matter. I wish I could talk to someone else who has used it for MS. And I need to find out if it doesn’t work can I go back to Tysabri and cross my fingers that I won’t get any new lesions?

One of things about these meds is that you can’t just go from one to the next. You have to wait 3 months in between each drug. I have had to do this twice before as I first used the interferon Rebif as my method of treatment, (made me so sick!) and then for a year and a half I did the daily injections of Copaxone until I switched to Tysabri after multiple significant relapses. The thing is with those drugs they didn’t make me feel better. Tysabri has changed how I live my daily life. I am really afraid of losing that for three months, never mind forever!

I have a follow up appointment with my neurologist this coming friday. Hopefully I will have a better idea of what I am going to do or at least what I should ask. I guess for now I will be kind to myself and watch out for the stairs and those damn bumps in the sidewalk.

 

my resolution to live one day at a time

I am sitting here looking at the computer screen with a thousand thoughts running through my mind, most of them are self-defeating, like “it’s January 4th, you can’t be starting a blog or making proclamations of new beginnings now! You missed your deadline! Now you have to wait until next year! ” And then I remember what I thought on the first day of this “new year”, what suddenly became so clear to me. Every day is as new as the next. No day is newer than any other. I have so much going on in my head, a ton of things to blog about, but I don’t have to do it all today and I don’t need the ‘perfect’ place to start, I’ve just got to start somewhere. So, here goes another attempt at getting some of this shit off my mind and out into the world!