Tuesday, April 3, 2012

Like A Child


As a child, I couldn’t wait to be all grown up. I hated how adults unapologetically and constantly made decisions for me. I wanted to make my own choices. What I failed to realize is that being a decision maker also makes you responsible for the outcomes associated. 

I learned that lesson during my teenage years by making bad choices, but as I matured I made better choices and my mistakes decreased. Now when I decide to do something, nine times out of ten, I recognize when it is a bad choice. If I elect to eat three cupcakes instead of one or if I stay up late watching a movie despite having an early morning appointment, I accept my bad choice. I also prepare myself to pay the consequences for that choice.

If only all of my decisions were so trivial everything would be all right!  I run into problems when I have to make important decisions. Making the wrong choice in these situations can lead to treacherous outcomes. That scares me.

Since being diagnosed, I have been on various MS medications.  Regardless of counsel from my doctors the decisions to switch, start, and stop certain drugs have been ultimately up to me.

Recently I was faced with the decision to begin taking a new treatment and I chose to opt in. I don’t know about you but I am always looking for that miracle cure. I was hoping to see some inkling of improvement but that really has not happened. Every time I get fatigued or when I can barely get out of bed, I question my decision. I know this is not relational thinking but I can’t help it. I am worrying that maybe I made the wrong choice and should have stayed on my previous medication.

I hate this MS brain of mine. It is causing me to second guess my every move. Of late, brain fog seems to be increasingly blurring my cognitive reasoning abilities. Because of my decreased aptitude, when I make life-changing decisions my husband is always with me. We talk and weigh our options but thankfully in the end the final determination is mine. When he disagrees with me I fight him tooth and nail.

One time in order to win my argument I even proclaimed, “It’s my life and this is what I want to do”.  He ultimately gave in to that one, but I am not sure how long he will allow it if I continually make bad choices. I don’t know if changing my medication was a bad choice but right now it sure feels that way. That scares me, too.

Making my own choices is my last bit of independence and I’m not ready to relinquish that privilege. When my decisions are overruled I feel belittled and sometimes embarrassed if done in public. My opinion is being reduced to one of an adolescent. I do recognize that I may have to defer more of my decisions to family as my decision-making abilities decrease. I just wish there was a way I could do this without feeling like a child again.

51 comments:

  1. This post really hits home for me! I describe myself as "slow witted"..I can't think fast. I have a hard time deciding on anything! Fatigue really slows me down to a crawl. I find that Provigil helps me but I can't afford the RX., and am looking forward to the day that the FDA releases it to generic!

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    1. I like that "slow witted." Well me too!

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  2. I think this is why I am reluctant to start a different treatment. I am currently on copaxone, but only 3 years into it I am so sick of giving myself those daily injections. I keep saying I cant wait for an oral drug, but I am not sure it is going to be so easy to switch. The fear of having a flare up overcomes the pain of the injections a lot for me.

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    1. It's a hard decision. If you ask me they all carry their associate risks.

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    2. I have been on Copaxone since 2006. I know the feeling so well. Doctor wants me to think about making a switch to a monthly I.V treatment. That would be ok since it will stop all of the daily shots, I am scared though to switch because I have been doing well on the Copaxone. I am just tired of all of the sore spots on my body

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  3. I am recovering from an autoimmune disorders via lifestyle changes. Nutrition, exercise and stress management. The doctors will not discuss this as a viable treatment option because they do not receive training in this area. I would love to share my experience if it interests you. Be well.

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    1. I am early in my diagnosis but I am doing the Swank diet now and I no longer have symptoms other than fatigue that is most likely related to the lack of sleep from being busy. In the beginning I had weakness and difficulty remembering what I walked in a room for but now I pretty much symptom free. I adhere to the diet pretty strictly and after a few weeks it's really not hard. When I feel like giving in and eating something I shouldn't I just think about what life was like and could be like again. I really recommend it the diet and if not this one any low fat diet because it helps tremendously.

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    2. I really wish someone would put money into research this.

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  4. I totally understand your struggles. I started on a double blind study with copaxone and a weekly injection. (For the life of me I can never remember the name!) Now I am on Rebif and though I like it, it would be nice to have an answer to the causes of MS and/or a cure. I hate when I'm so tired I cannot control my emotional outbursts. I was with my boyfriend and his two teenage daughters when the heat and exhaustion overwhelmed me and I had an outburst. The real bad thing is even apologies cannot make it better.

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    1. mistimouse, I understand exactly how you feel. How many times can you blame MS for getting flustered, confused, crying, even raging? I don't think my family believes that I can't control my outbursts at times. But I can't. When it's hot, when I'm tired, I either shut down or burst into tears.

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    2. mistimouse, I can't afford to NOT believe apologies don't help. I

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  5. Lorena, I would love to hear about your nutrition, exercise, and stress management. I am trying my best to focus, get up early with my children, and hopefully start working again. Before I do all of this, I must make a lifestyle change as well. I am willing to do so, but I do not know where to begin.

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    1. Try the swank diet. It's easy and has been proven to work for people with MS. I can't say enough good things about how well I feel compared to before. The hardest part to me is trying to find food when I eat out that's prepared like I am suppose to eat. If you shop at Earth Fare grocery store you pretty much don't even have to read the labels because they don't carry many products with the things that are off limits since they are an organic wholesome grocer. If Earth Fare isn't in your area try Whole Foods. After about a month you become somewhat of a old pro at the new lifestyle.

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    2. Did it help with mobility issues?

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    3. Well like I stated in the other post I am early in my diagnosis but I did notice I don't have the weakness and tingling in my right leg/arm anymore and the fogginess and forgetfulness isn't an issue anymore as well. I would never go back to eating whatever for those reasons alone. I look at it as I can't help the fact that I have MS right now but what I do have control over(diet, exercise, etc) I will do to help if it even hints that it will help me to not become disabled. Giving up certain foods is a small price to pay for me to maintain a good quality of life and independence for as long as I can have it.

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    4. Here is the link to see what the diet consist of but I bought the entire book off of Amazon...http://www.swankmsdiet.org/About The Diet

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    5. Keyonna, Thanks for the feedback!

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  6. Lorena,
    I was diagnosed with Primary Progressive MS in 2009. When the Neurologist told me that there were no drugs to treat this, I said, "Hallelujah" because I knew there would not be anyone trying to strong arm me into using any Pharmaceutical treatment. I am very holistic in my approaches to health and would welcome starting a conversation with someone, of like mind, so that we could bounce different approaches/failures/successes off of one another. Let me know if you are interested in this type of friendship and I will send you my email address. I am also on FB. Look me up!!

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    1. http://youtu.be/ICMhLLjXwRQ

      My good friend (who is very holistic also) shared this video w/ me. I do not have progressive ms (yet) but I am pretty sure this Paleo Diet must be something if a doctor w/ progressive ms is sharing it w/ others. ;-)

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    2. IF this is Dr. Wahls, she has a Webinar (which I watched last night) repeated on Thursday. Look for it and sign up to listen to the talk. She has MS, was actually relegated to a wheelchair and is now out biking...

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    3. SA, good luck to you! I wish you much success.

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  7. I can relate to every word. My saying is " I feel like a kindergarten student trying to ace courses at MIT ". So discouraging at times.

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    1. "I used to be smart" is what I think when I get into my frequent muddles. Now I don't trust myself on the simplest things. I am having a lot of trouble trying to respond to this blog. Out of all the things MS has changed in my life, the cognitive stuff combined with the fatigue has been the most unforgiving and the most life changing.

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    2. Ihmarinez, We are certainly in this one together.

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  8. Nicole, I feel exactly the same way. It's so frustrating!! All my life I've been a smart independent woman, now I find myself second guessing my words and Actions. My saying is "I may be slow, but I'm not stupid. Courage

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  9. I take heart in knowing with MS medications, my goal is to never know if I made the correct choice. I look at it like I have 2 likely outcomes. Either I have no new flares or I have many flares like before. If the later happens I know I made the wrong choice. However with the former, no new flare outcome, I will never know if it's the drug I take or something else. I think some times we have to remind ourselves when we are uncertain that not being able to evaluate the correctness also has the flip side of not being able to measure the level of the mistakes.

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    1. life well lived, Thanks putting things into perspective once again!

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  10. nicole, while i can't completely understand...i do/have experienced many similar symptoms. recently while dealing with the neuro about fatigue, brain fog, memory, etc...my integrated homeopathic medical doctor has put me on an anti-inflammatory diet (many of us MSers have viruses that cause inflammation and that go untreated), supplements to help the inflammation and viruses, supplements for memory, fatigue, and put me on LDN...about two weeks later i'm starting to feel better...today i feel a bit clearer (got 2 things done on the list ;-) )...she also tested my hormones - guess what? they were VERY low...now treating those with componded creams...she shared that the hormones are easily the cause of the brain fog and memory - NOT the MS. i share this with you so that maybe, if you haven't you can explore other causes...i'm learning that not everything is the MS. diet is a big factor, i'm sure you're aware...i'm experiencing a change in my abilities has a direct correlation to what i eat &/or drink. i wish you the best...enjoying your postings!

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    1. Janet, Thanks for reading. Never thought about hormones! That's a new one. I'll ask Dr. about it.

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  11. I wonder if your increased brain fog of late is due to your new medication.

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    1. Judy, I never thought about that. Good idea.

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  12. I have read that about half of MS patients suffer some significant cognitive loss. I see it in my beloved wife, sometimes dramatically, sometimes subtly. I have seen it in myself under non-MS conditions when my thinking has been slow or muddled. I see it in my 95-year-old mother.

    What to do? Admit to oneself that one is not as sharp as before and be humble enough to accept advice from those who care, those who love you. Be more careful in decision-making and beware of radical solutions, as errors there might have excessive consequences. Accept that some loss of independence is appropriate in whatever areas you find yourself somewhat disabled, physical, mental, psychological. For example, if blue moods are too frequent, accept mild mood-elevating drugs for "better living through chemistry," even if being mellow is not as exciting as being quick-witted.

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    1. Douglas, Thanks for stopping by and I appreciate the advice!

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  13. Hi! For those who wanted to connect and chat about holistic approaches my email is llues@utopia-wellness.com

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  14. I have been living with systemic lupus with significant organ damage for 17 years. While I believe medications have a time and place in my journey, I didn't want to be on them forever. The side effects at times have been worse than the disease itself. So, I took as much responsibility as I could to get well. I am very grateful as it was predicted that I'd be on dialysis at some point. I didn't buy that story for one second. We are not just physical beings, we are spiritual and have great power. We must keep optimistic and believe we will be OK.

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  15. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

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  16. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

    ReplyDelete
  17. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

    ReplyDelete
  18. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

    ReplyDelete
  19. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

    ReplyDelete
  20. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

    ReplyDelete
  21. I know exactly how you feel, Nicole. I've elected not to take any of the DMD's, (my choice for my own reasons). I may regret my decision one day, but since it's a matter of delaying progression and not preventing progression, it's a choice I am comfortable making at this time.

    The physical challenges I find easy to handle through a large dollop of humor, but the cognitive issues are sobering. Testing shows that my IQ remains robust and intact, but my Executive Reasoning capacity drops to the 16th percentile within fifteen minutes after learning new skills or discussing complex situations. The unfortunate mix of intact intelligence and diminished ability to use it causes me great sorrow.

    One thing helps immensely: Adderal, or any of the generic amphetamine salts. Since being prescribed for me several months ago, these have made a huge improvement in my quality of life. I have to be careful taking them due to other medical conditions, but when I have to go someplace new and unfamiliar, tackle preparing my taxes, learning anything new or just needing the energy to do necessary chores and errands, these have been a welcome tool in my arsenal of quick fixes. If you haven't considered using them, please discuss the possibility with your Neurologist.

    Good luck to you, and keep your spirits up!

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    1. Closet Libertarian, I just had the conversation!

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  22. I am a 58 yr old woman, married 32 years, diagnosed 7 years I ago. My husband has been very supportive and helpful in all the decisions concerning the drugs I take (ampyra) now. clonazepam and nortriptolene to sleep and make tingling go away so I can sleep. Joint decisions are important, after all, he has to watch me struggle, mostly walking, but sometimes getting in and out of bed. I think it's important to listen to your husband's opinions,but to have the right, and not feel guilty if you veto his decision.

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  23. Nicole, I hear you loud & clear! :) I have had several of those "conversations" with my husband & I agree. It is really hard to see that maybe, just maybe, I don't have my wits about me. But the thing that stops all my frustration & rage is that I know he loves me & is looking out for me!

    Hang in there Nicole! You have so much inspiration & knowledge to share & inspire us with!! :)

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  25. How do you deal with feeling like your hubby is stuck with you. I know he loves me and I love him, it hurts to watch him age as he watches my decline with this darn MS. I just came off a 3 day infusion of steroids. After going through the week and 1/2 of hell from them I actually felt like my old self for 4 days. Today a different story I feel tired and weak again. So I do not think the infusion was worth the trouble. Have any of you had the steroid infusion. Oh and today I have been dropping things like crazy.

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  26. So good topic really i like any post talking about Health Articles but i want to say thing to u Health not that only ... you can see in Health ideas Articles4health.Info and more , you shall search in Google and Wikipedia about that .... thanks a gain ,,,

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