Saturday, March 27, 2010

captured that healthy feeling if only for a moment

And it was wonderful. No matter how many times I temper my expectations with reality, or even a little pessismism to not allow a big fall, it's clear that any chance at 'getting back' some of your healthy life is the utopian goal. And the only reason I say that is because those times you catch a glimpse of normal health, you can't help yourself. You have to keep your feet on the ground and be realistic, but we all want it no matter how content we are with stopping progression. Now for everone I imagine that's something different. For some people it would to be back working full time and being able to fully engage physically and mentally in whatever activity you want to pick. I had a morning today where I felt absolute peace of mind. Felt really good about the world, felt confident and all that stuff that I used to take for granted. MS is always in the way of that. If you're driving somewhere, you stress about is there going to be a good place to pee. If you're walking somewhere, you stress about being able to make it as far as you want to go. If you're just with people, you hope you have the energy to stay engaged and not start getting dizzy and confused and in pain. That's just how it is for many of us and it really gets in the way of finding your peace of mind and feelings of contentment and feeling just plain happy about being where you are and doing what you're doing.

This morning, and I think once again the exercise is starting to pay off, I captured some of that and I wish I could bottle it up, but also hope there's more to come so I won't have to! For me, one of those things that always made me feel all was right with the world were the weekend mornings. I've always been an early riser and I would spend lots of time focusing on things like exercising or taking all the kids to soccer or something like that. I used to get up at about 7:00am on Saturday or Sunday morning and go play a few hours of racquetball, or go for a good run or something and be done before noon and be fully awake and engaged and feeling wonderful. Well the MS has made it so I haven't had a day like that in I can't tell you how long. I still get up early, but by the time I have the coffee made and things like that, my legs are usually hurting so bad I'm not only not enjoying the morning, but I am definitely not thinking about going forward and doing anything else. It's just a trial to wake up and start moving forward and doing what you want to do.

This morning was awesome. I woke up and the sun was out and I didn't feel all that bad. Well I swing my legs out of bed and hmmmm, they aren't hurting that bad. Cool I think. They will be soon but Sarah has practice this morning and I'll go down and make the coffee and eggs and then find a seat because they are always hurting and I'm always a little dizzy at this point. It didn't happen this time. I just kept 'doing it'; standing the whole time pain free. I made the coffee, no leg pain. I made the eggs, no leg pain. I even had to go down the dreaded basement stairs to pump up her soccer ball. No problem. So then I decide I'm going to offer to be bus driver and collect all her friends and drive; I never do that. By the time I get her ready I usually just want to sit or lie back down. But today I didn't. I went and collected them all. We laughed and joked because I wasn't just thinking about getting back home and getting on the couch! So I dropped them off and sang at the top of my lungs on the way home to some Chili Peppers and just felt 'normal'.

It's that kind of stuff that means more than anything when you think about getting better. Just being able to live life happy and not constantly distracted by your challenges. To take care of myself in the background, but not be obsessed with taking care of myself to just have enough energy to enjoy SOME of the day. No matter how hard I say I'm OK with just not getting worse, and believe me I am; it beats the alternative, in the back of my mind I will always want to get 'better'. I think that's just human nature. Well this morning I did feel better. That's been a long time coming. So the next time you're driving down the street feeling good about life with a smile on your face, take some time and think about how lots of people can't do that anymore. For one second don't take it for granted. Just to be 'normal' is all we want. I don't care if I run the Boston Marathon. I just want to live life not constantly distracted. And, to me, without having done this procedure, I don't know if I'd have had a morning like this morning. So just being able to get up, feed my daughter and take her and her friends to practice a 1/2 hour away just made my flippin' year. Lowered expectations? I think not, feeling healthy is a beautiful thing, it's a gift. Try and make the most of your life if you have your health, you're selling yourself short if you don't. And the next time you are just doing something 'normal' and feeling irritated because something totally insignificant in the grand scheme didn't go your way, just look in the mirror and try and feel how wonderful it is that you have your health. Totally, totally cliche, but it's truly priceless, it really is.

I've put a picture of myself this morning on here because if you can go in public when it's 40 degrees out dressed liked that and still feel good, well then you are just feelin' it! Ha! I feel it's the boots that complete the ensemb', don't you?

30 comments:

  1. You say your buddy Mitch had this procedure in Booklyn. Where? I live on LI and I could be in Brooklyn in a heartbeat. I am so happy for your recovery. I would take back a lousy day at work any day if I were healthy.

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  2. Long may the 'healthy' feeling continue!!

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  3. Love the outfit!

    Michelle

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  4. Anonymous (1st commenter), the Dr. is at Kings County Hospital and his name is Dr. Salvatore Sclafani. I know he just went public and is now probably booked to kingdom come, but give him a shout and see! His assistant/nurse/secretary is named Holly. The phone number is Holly Barr 718-245-4465 & (cell) 718-362-0538
    Radiology, Chairman's Office, KCHC Suite S2N50
    Good luck, I don't have any idea what his backlog is like now that he went public.

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  5. Thank you for sharing your story! I am inspired by your description of what 'a day in the life of' can be for people with MS. Someone without MS wouldn't have any idea how challenging it can be just trying to 'stay engaged' in an activity without "distractions". I couldn't have expressed it better myself. And I'm even more inspired by the prospects of your future without those MS distractions!! wishing you all the BEST!
    Donna

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  6. Congrats Lew. That's the way to "seize the day."

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  7. OMG ooh lala yes the boots are nice but I'm loving the shorts hehe!

    I am so enthused to read what you've written. I remember the first time I too baclofen I felt free'd, I was able tos tand at my glass top stove and clean it properly for the first time in years! I stood doing that with no problem for ages! Unfortunately baclofen doesn't last and for me the jump off point with it was far better than how it's been since. But your freeing light easier experiences remind me of how happy I was just to do that cleaning! haha

    I can't wait to be Liberated, thank you for sharing your continued liberation ;)

    Sarah.

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  8. it must be nice to have your life back, i to am a father with young sons and look forward to hearing more positive news on your recovery, i wish you luck in your recovery from a fellow mser

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  9. You bring tears of joyous expectation I have for my son!! Thank you for posting/going public. Please keep us posted. WE cannot get enough of HOPE. I'm thrilled for you and for your family!!!

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  10. I hear you!!!!!!! That first paragraph above says it all - Thank you, I'm right there besides you, love Brooklyn - love the name Scalfani, loving the Italians of this world!!

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  11. Oh just again when I needed a hope booster! ty for sharing it means a lot to many of us! Brenda R

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  12. That just might be the staple outfit for 'I'm feeling great and I don't care who sees me like this!!!!" I will have to run out and buy one because I too am hopeful!
    So happy for you!
    a

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  13. Thank you for giving me hope - waiting for a date to go to Poland since the UK seems happy for us all here to carry on suffering!

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  14. Lew, I am so looking forward to seeing what the procedure does for John. I love to read your blog and here honest to goodness truth from someone that had this done.
    John is scheduled for April 7th, my Moms birthday. It will be his lucky day! THANKS TO YOU LEW!!!!! (for hooking us up to Dr.S and Holly)

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  15. I like your comment about feeling how wonderful it is that you have your health. I'm 51 and I look at people who are 60 or 70 walking and running and wish I could be that active at that age, now I have hope that I can!

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  16. How great for you! I guess now everyone just gets in line...

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  17. What a great message-- hope you continue to see improvements. Enjoy reading your postings-- sometimes poignant, often funny, and always honest. All the best! prairiegirl

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  18. Awesome for you!! I think I might have to get in touch with the Dr.,s you mentioned. I live in Canada and for whatever reason Canada is behind in their research. The government is sitting on their collective asses and are not looking at what other countries are doing to help people with MS.

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  19. You hit our MS life square-on! The pressures for treatment in Canada only increase with encouraging stories like yours!

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  20. Aint it the truth, as the song says...You don't know what you've got till it's gone!
    I look forward to writing a similar blog about feeling good, or at least better!

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  21. Hey LC, wanted to also wish you the best as I have followed your blog as well, but cannot post there, did try. (Sorry to sabotage here Lew :))

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  22. Wow, that's so eloquent and as others have commented describes our days and our wishes. God bless you with your continued recovery I am waiting for my testing to be scheduled at George Washington Univ in DC. Then if they find the ccsvi I hope to get Liberated like you. I have never been so proud to be 1/2 Italian than I have right now, they have heart and compassion and some of the greatest minds in history!!! Viva, Italia!!! God bless Dr Zamboni and all those Dr's that have the courage, compassion and intelligence to provide this treatment for those of us who will be helped by it.

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  23. I am so happy for you Loobie - may you have many many more of these good days.
    I felt a bit emotional reading the blog because I so rarely stop and think about MS and all it's doing and forcing me to adjust to. Sometimes when I do think about it I feel pretty awful. It gives such hope to read about how you are improving. Love the boots and shorts ensemble by the way! :))))) (WW from TIMS)

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  24. Lew,

    I'm glad to hear that all is well, unfortunately I think we still have a major problem. I think you may have just cruised around town, chillin out, lovin life, and jammin out to Anthony Keatis ...in your boxer shorts. Bummer. :)


    Akaheather

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  25. I am very happy for you and wish you a great health for good. The good news have a double impact on us: Happy for the liberated people and happier for the rest of us (MS patients and family) who are able to build more hope on this.

    A lot of Neuro think this is temporary but they are getting an increasing "No" with the time and they should get into this sooner or later.

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  26. Hi Loobie,

    I'm Fernando from TIMS. I'm extremely, extremely happy for you. Really.

    Oh, and you look like Neil Peart from Rush!

    Fernando

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  27. In principle, a good happen, support the views of the author

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I've figured out how to get everyone to be able to post on here.