How do you know? & Really?

~~~~~How do you know?~~~~~~~~~

Since I am still pretty new to the MS scene.. I have a question. How do you know? By that I mean how do you know when it is time to get the doctor involved because of new symptoms.  The problem I come across is that the one doctor I see, if I mention the littlest thing (for example – the fact that I had removed bread from my diet and it seemed to help a little bit) Then it snowballs in to more and more tests and more expenses that my insurance may or may not pay for. I opted not to have the test because to me its pointless to test to see if bread affects my system if I’ve already resoluted to not eat it anymore. Doesn’t that make sense?  Coupled with the fact that even if they do pay part of it, I still can’t pay whats left. ><  Least not right now, and I fear its only going to get worse. I am still trying to figure out how to pay for the three different tests that they did to figure out that MS is what I had in the first place.

My MS tends to be a very fluid pretty consistant situation. It is usually in one of my two legs or feet, or both. Ironically today my legs/feet feel just fine, and my left arm is numb, especially my pinky finger, and my left side of my back. That being said, I know that in a few days it will be something totally different with a slew of different affected areas and different sensations… so when is when?

And if they really can’t do anything for me except inject me with more drugs that they “think” might help, but aren’t really sure how, then how do I know just taking time to relax and let the symptoms settle down wouldn’t be better and cheaper, and cause my family far less frustration?  It would be one thing I guess if it was to a point where I felt like I totally couldn’t walk, or couldn’t function.  Its painful at times, but right now its still more of a frustration and annoyance at my body for not keeping up with me, but I find that sometimes maybe at the moment if I can’t do something, I’ll just try a little later, and I can do it. Mind over matter I suppose… but it doesn’t always work.

I’ve restarted the Copaxone, which for whatever reason both times I’ve felt worse at the beginning. I’m told that is not common in most patients, and they attribute it to my lack of enthusiasm to take medicines in the first place. Maybe I have the wrong attitude, I’m going to have to pray on that one I suppose, for clarity. Now where did I leave that Serenity poem.. ^^

~~~~~Really?~~~~~

This weekend, my daughter went to her friend’s birthday party. When she returned, she told me that her friends mother had asked how I was doing with the MS, and Shelsea said I was doing alright. With that, Shelsea said that her friends mother turned to one of the other adults at the party and was talking on and on about how I “only eat vegetables” and how I’ve let MS take over my life…… (and  this conversation all in front of my child as well.. >< )

 Hmm…. So because I’ve chosen to be more careful about what I eat, and try and be better about doing my part to live healthier, then in others point of views,  I’m no longer in control of my life? I’ve let MS take over? ………Really?

The crazy thing is I’ve only spoke to this woman once since I found out, and it was not even that long of a conversation.  And really it is not as if I happen to hold that much respect for this individual in her particular life decisons and priorities, so I suppose that should be the end of my frustration over her comment right there. To consider the source… still, it frustrates me a little..

 I’m not as physically active as I’d like to be, in fact it bugs me that I’m going to have to be careful this summer once we start working on the house. I want to be there the whole time! I know I won’t necessarily be able to, but still. I have always had a “push on thru” attitude when it comes to work. I like to get things finished! But I know I’m going to have to alter my attitude a bit, but I still don’t think it means that I’ve let the MS take over.

How is it that someone can “know” one thing about you, or have one conversation with you and think they are endowed to a place where they can judge you?  

MS is not my life priority, If anything I emphatically try to not let it interrupt the way things were before. In some things I’ve succeeded and in others I’ve had to make alterations, but I’m still not sure that means I’ve failed and that MS now equals the definition of me.

 I still try to be there for my husband,  I still take time out to have quality conversations with my kids on what they are thinking & feeling, and try to help give them direction and guidance where they need. I still try to be there for my sister as she goes through her 1st pregnancy,  I still volunteer and teach my son’s children’s church class on rotation, and I still go to work full time, and try and do a good job there, and I still try to keep up with friends when I can.  

And so what if I actually care about what I put in my body? Should it really an issue to anyone else? Should it be something to put me down over?  In a counseling video by a gentleman named Gary Smalley, he spoke of finding treasures in difficult situations. The “pearls” as he called them were good things or lessons that came of bad situations or events.

If anything, I can say that because of the MS, I’ve paid more attention to my health and what I eat, and in doing so, (though it wasn’t the initial intended result) I’ve lost about 20lbs now, and even was able to put on my wedding dress last night at the urging of my children! I hadn’t been able to do that for years! Plus I now have a valid venue in which to instill healthy eating habits in my children. Is that such a bad thing? …….This is what I’m saying.

 

 

 

3 thoughts on “How do you know? & Really?”

  1. Sing it sister. I think it’s great you are being healthy. I have been doing research and even the experts agree that diet and excercise is the key. I think you are right to distrust the experimental drugs. I can’t believe that b—— that said what she did in front of your child. What a ———!
    I think you go to the doctor if your symptoms scare you. If you feel generally ok then there is no need to go. I have been feeling a little strange but not enough to drive me to the doctor just yet.

  2. My dear sister –

    1 – below is an article written by Dr Weil regarding MS. It appears to be an elusive disease with lots of different and changing symptoms.
    When it comes to running tests I would make a decision if I were you: Do you want to become a test case? Someone that can be studied? If so, I would ask the Dr. to come up with the funding for it, or find out if there are any current studies that are going on.
    Personally, I would opt for being a part of a study that is working on natural remedies like lifestyle and diet changes and I would avoid studies where I would have to take pharmaceuticals. Those studies would include tests like the one your doctor wants you to pay for.

    If you don’t want to become a test case – just keep doing what you are doing. Make the changes you make, give it time, see if the changes help. Journal. If things get to a point that you are really concerned, go talk to the Dr.

    Here is an example of one clinical trial using natural antioxidants, I think it is expired, but you get the idea: http://clinicaltrials.gov/ct2/show/NCT00010842?term=Ginkgo&spons=NCCAM&rank=9

    2 – that lady needs to rethink her ideas. A person who makes some lifestyle changes when they find out they have a disease is attempting to NOT let the disease take over. For example – My uncle has some heart problems. When he first discovered them, he started exercising more appropriately, he changed his diet, stopped drinking as much, and learned some meditation/relaxation exercises. The result – he took over the disease! He feels healthier, looks better and has lived in spite of the disease. What might have been the result if he had not made those changes? His disease would have taken over his life and he probably would not still be alive.
    The disease is still there. It is still something he is aware of daily and sometimes really concerns him, but since he found out about it, he has had more of an impact on it than it has had on him.
    Like my uncle, you are not going to let it take over. You should be championed for that! Someone who would ridicule you for refusing to succumb to MS is either a fool or embarrassed by their own indolence.
    Furthermore – everyone would benefit from the lifestyle changes you are making and should set goals on the three key areas for health (both physical and mental): Nutrition, Sleep and Exercise.
    I love you Serina! God Bless!

    Here is that Dr Weil article:

    Multiple sclerosis (MS) is one of the most baffling of all diseases – we know very little about what causes it and what factors influence its progression and outcome. MS begins with localized inflammatory damage of the myelin sheaths surrounding the nerve fibers due to an attack by the immune system. The resulting damage interferes with nerve impulses and can lead to symptoms such as muscle weakness, loss of vision, and a variety of other neurological impairments.

    Although considered an autoimmune disease, it is not clear what causes the immune system to attack nerve sheaths. Researchers have been studying a possible viral trigger, but this would not explain why MS is more common among those who live in northern latitudes and uncommon in those near the equator. Additionally, scientists are unable to explain why there are so many different forms of MS, why some people have transient symptoms that never return, while others experience cycles of exacerbation and remission. In some people MS is relentless, leading to complete disability and death.

    A drug called beta-interferon has become the conventional treatment for MS patients, especially those with the remitting variety. It can slow the progression of the disease, but is expensive and produces unpleasant side effects. Really effective medical treatment is still not available for most patients. I like to work with patients who have MS because of its variability and potential to go into remission, as well as its responsiveness to stress reduction, mind/body treatments and changes in lifestyle.
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    These are a list of suggestions I recommend for my new patients to experiment with, so give it a try and see what works best for you.

    * Decrease protein toward 10 percent of daily caloric intake. Replace animal protein as much as possible with plant protein.
    * Eliminate milk and milk products, substituting other calcium sources.
    * Eat organically grown fruits and vegetables as much as possible as well as organic products made from wheat and soy.
    * Eliminate polyunsaturated vegetable oils, margarine, vegetable shortening, all partially hydrogenated oils, all foods (such as deep-fried foods) that might contain trans-fatty acids. Use extra-virgin olive oil as your main fat.
    * Increase intake of omega-3 fatty acids from fish, walnuts, or flax and hemp seeds.
    * Eat more fruits and vegetables.
    * Eat ginger and turmeric regularly.
    * Take acidophilus culture and psyllium if constipation is a problem, or use the ayurvedic herbal bowel regulator, triphala.
    * Take my antioxidant and daily multivitamin formula and a B-50 complex vitamin, and a multi-mineral supplement daily.
    * Take 5 grams of soy lecithin granules daily (store this in the refrigerator).
    * Take 30 milligrams of coenzyme Q (Co-Q-10) two or three times a day.
    * Do some kind of light aerobic exercise on a regular basis. Choose something you enjoy but do not push your self to the point of exhaustion.
    * Visualization, meditation, and hypnotherapy can redirect your mental energies in positive directions.
    * Experiment with traditional Chinese medicine and Ayurvedic medicine from qualified practitioners.

    Andrew Weil, M.D.

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