2 Weeks, 2 Days

I hope you all aren't getting too tired of these little updates, but I just keep feeling a little bit more normal everyday and I want to share.
The past four days I have not been achy! My shoulders are still tight, but I am not hurting. This is such a relief! Yesterday I had the young women over at my house for the weekly activity, so I had to clean my house. I swept and mopped the floor, I did the dishes, cleaned up the family room and even crafted quite a bit. Normally after doing just one or two of those things, along with the busyness of having 8 twelve-year-olds over, I would have been completely useless and exhausted, but I wasn't! Sure I was tired, though not exhausted and my body didn't ache and I still made dinner, cleared the table and was able to put the kids to bed without being grouchy and then Curtis and I watched a movie.
My bad days are as good or better than my good days were and my good days are a little more what I would consider normal each day. Still no more headaches, but my ears have felt some pressure behind them (cold related I hope?).
One thing that does concern me a little is I feel a little tickling on my foot, my hand, or on my scalp (one area at a time, not all at once) a couple times the past couple of days. I don't normally have this sensation, so it leaves me scratching my head a little, no pun intended. (hee, hee)

11 Days Post Procedure

Since my Liberation Procedure I have been feeling pretty good. I am not a new person, but I do feel a difference. My optic neuritis pain, that has bothered me the last three months, is almost completely gone. My almost everyday headaches do not happen anymore, I had one on Thanksgiving, but so did Curtis, and I had one on Monday, but I'm pretty sure it was sinus related since a had a small cold with stuffiness and a slight sore throat. It is so much easier to be pleasant to my kids when my head is not throbbing. I feel I am also thinking clearer.

I am not bounding with energy, though I had hoped I would be. I did read that one of the main side-effects of Plavix is excessive tiredness, so I do have hope of feeling better when I am done with it in a couple weeks. Time will help and if I could get Claire to sleep through the night it would help too.

I had my yearly MRI on Wednesday. My neuro called and said I have no new lesions and all of my old ones are smaller. That was great news. It would be so exciting if this procedure help prevent anymore, ever! =) My sister Alaura is scheduled to get a venogram/possible angioplasty on December 22nd. I am so excited for her. Though she has CCSVI, she does not have MS and this will hopefully make it so she NEVER does.

My Next Venogram

I talked to Dr. Hatch yesterday. He said he has been studying my images and found my jugular vein is significantly narrowed right at the valve at the top of the vein. He didn't notice it at first because it is common for valves to be narrower than the rest of the vein, but not this much. He also found a couple places in my azygos vein (the one that drains the spine) that are narrowed and can be opened also.
It is good news that he found something to fix. My next venogram is scheduled for November 22, the Monday before Thanksgiving. I plan on taking it easier this time during recovery. The last venogram through me for a loop. I should feel better within a week or two and hopefully I will have more energy and stop the progression of MS. Wahoo!

3 is the azygos vein.
I guess mine isn't nice and smooth like that if it has a couple of narrow spots.

Yet another blog...

So, I really want to keep track of, and share, all the things I am learning about ways to help MS and to spare all of you who are not interested, I have created a new blog. I hope to be adding to it whenever I come across things that I find interesting and helpful and probably updates on my progress and feelings. You are welcome to visit it or follow it. Let me know if you would rather be on an email list and I'll add you to it.
Thank you all for your comments, support and helpful suggestions! =)

www.mymsnotes.blogspot.com

Clarifications

From a recent experience I had, I realized that I may be slightly misunderstood, so I want to clarify a few things, and the more I read and learn, the more my opinions change, so next month all might be different, but right now these are the things I want to comment on:

1) I am under the care of a medical doctor, a neurologist, and I am doing the things he tells me to do. I feel it is important to track my condition and have medical guidance in what I do.
At my last appointment he said, "What you are doing is working, keep it up!"

2) The neurologist is the one who told me not to take the drugs for MS, for the sake of my unborn, or in my case, un-conceived baby. This opened the door for me to look at more. No one could make me sit on may hands with my fingers crossed, hoping I would be ok while I waited. I have learned so much now and am doing so much that I feel if I am doing well and my yearly MRI's come back with no new lesions then I feel no need to start the $1000/mo. injections that even my neuro calls toxic, but they are not out of the question.

3) I feel strongly that anyone in any condition should do their own research and work together with their doctor to incorporate what they found. I mentioned vitamin D to my neuro and he said, "Yes! I just read a study on how high doses of vitamin D have reduced occurrences in MS. But because the ranges were so varied, 4,000IU to 20,000IU, I set it aside." Wow! Here is a simple way to help people with MS and because he didn't really understand it he set it aside. He was more than happy to assist me in using this therapy though, because I brought it up.

4) I do not eat completely raw. I experimented with this and I feel healthier because of it, but because I didn't like many of the recipes I felt there were holes in my diet. I love cooked broccoli, but not raw, so I cook it and enjoy it. Mostly I am eating whole foods, with as little additives as possible and avoiding foods I feel I am sensitive to (gluten and dairy are the two main ones).

5) Diet is not the only thing I am doing. I take several supplements that double-blind, medical studies have shown to help (omega-3 oils, vitamin D, specific antioxidants), and I am seeing a wellness doctor who is helping me with emotional freedom techniques (which I feel got me through my miscarriage), heavy metal detox and immune support supplements. Curtis doesn't believe in a lot of the alternative stuff Dr. Babcock uses, but he cannot deny the results. I feel like a new person compared to just a couple of months ago and Curtis can attest to this.

6) The doctor clarified, at my last appointment, that I have not actually been diagnosed with MS yet. I have to have a second episode for that definite diagnosis. Well, I'm not wait around for that. I am doing everything I can to never have another. But only time will tell. He said on average episodes happen every 18 months. It will be years before anyone who has MS knows if what they are doing really works.

I know I'm babbling on, sorry, one more.

7) This goes along with #3. Medications alone with not stop MS. The meds only slow it (if they do anything at all for some, besides cause horrible side affects). I met a woman at a park with two young children the same ages as mine. She was using a cane and struggling to maneuver over the wood chips and failing to keep up with her kids (I caught one from falling off the play structure for her, she just couldn't be there with them). I was pretty sure she had MS and decided to talk with her. She said she had been on Copaxone for 2 years and it has worked great for her. She only recently started using a cane. In my mind, an episode once in 2 years isn't far from the average 18 months without meds. I would not be satisfied with a therapy that after only two years left me using a cane, but surprisingly she was. I asked her if she had tried any alternative therapies, she had honestly never even heard of them.
On a more personal note, I give my aunt Wendy as an example. She did all her doctor said, used Avonex for years and as we speak hardly has the strength the lift a fork to her mouth. This is someone I love, who lived with us and close to us, who came to Sunday dinner when she could. I guess my point is THERE HAS TO BE MORE, more that I can do.

I hope to never turn down a chance to learn and grow. I love all your support and advise.

In the Raw

As some of you may know, I am trying to eat mostly raw foods. I have read a lot about how this helps MS and many other health problems. It is the diet of Adam and Eve. It is a difficult transition, harder for Curtis than for me though. He doesn't have the motivation I have. He ate 6 donuts at work the other day, didn't even blink an eye or gain an ounce for that matter. He is really patient with me though. Sometimes I just don't have the energy to make two separate meals and he takes care of himself. He will usually take a bite of whatever I have made, say, "It's OK." and goes back to whatever he was eating. He is pretty brave considering his family background. His dad is a really picky eater because his mother would make 3 meals every night for dinner so everyone in his family would be happy.

I changed my diet a lot after marrying Curtis. It was a slow progression to mostly processed foods that he enjoyed. They were quick and easy and didn't take much thought. It took me gaining 70 lbs and being diagnosed with MS to wake up and realize what food can actually do to you. I heard a statistic once that said over 90% of disease is caused by lack of proper nutrition.

When we cook our food we not only kill the living enzymes that help our bodies to heal, but in most cases destroy the vitamins also. As a nation we are starved for nutrition. If you are what you eat, I want to be alive and well!

Where to start?
I have really enjoyed searching the internet for raw food groups, tips and recipes. There is so much out there! I enjoy these sites:
www.goneraw.com An online community with tons of recipes
www.greensmoothiegirl.com She has videos on youtube too and an easy start program you can purchase (but I have not).
www.livingmom.net She is actually living on a homestead in Texas trying to be completely self sufficient. I don't have the energy for that, but I enjoy her blogs.

I have also been sharing tips with my sister Becca, and visa vera. She has been eating similarly, but still eats a variety of whole grains.

I really want to help other people, but I always worry about others thinking that I am preaching or they think I am judging them or that I am just plain crazy. I just feel there is so much the general public doesn't understand, but how do I share without the fear of offending someone and having them turn their nose up at me or my food for that matter.

I think we can all benefit from getting a little more fresh food in our diets, I know I am extreme, but I feel I need to be. I think it is helpful to think of it this way: add fresh stuff and don't worry too much about not ever eating this or that. The more raw foods we add to our diets the healthier we will be. Just a thought.

Have a healthy, happy day!

I Want...

I was told by my wellness doctor to write down a list of things I want so they are not just wishes. I know that if I put it in a notebook s0mewhere I will never look at it again, so here it is...

1. I want to be healthy and have enough energy to run after my kids, keep up with house work and projects and do things I enjoy.
2. I want to not just slow down MS, but halt it, stop it, put it in remission, reverse it or even cure it!
3. I want to be a healthy, attractive weight.
4. I want to learn to prepare healthy meals that my family will enjoy.
5. I want a healthy baby in 2010.
6. I want enough money to meet our needs, plus pay for medical and vacations.
7. I want to help other people.
8. I want to make and keep good friends and do things with them.
9. I want my kids to be healthy, happy and good.

I am sure I'll be adding to this list. My mom says "want" is my middle name. =)