Three years- what I have learned

A forum to talk about the general challenges of daily life with MS.

Three years- what I have learned

Postby Terry » Sat Mar 28, 2009 3:40 pm

April 1, 2006 is the date I consider the beginning of my MS trek. That was not the day of my first symptom nor the day of my diagnosis, but the day I really knew something was wrong. Lew, I thought I'd copy your daily posts in a way, and for a while, post some of the things I've learned in this three years.

First
I have learned that there should never be a period at the end of any sentence regarding ms There is no end There is no "finished" There is no proven reason yet for why we have it There is no cure yet for it and there are no meds that work 100% of the time and heck I'll even say there are no meds that really work any percent of the time because I have yet to see anyone recover completely All sentences regarding MS should be like that children's song that goes on and on my friend some people started singing it not knowing what it was and every time I think a period goes at the end of a sentence there is a new but or however yet and or some other freaking conjunction that comes along to make sure no period applies

:x :wink:
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Postby Terry » Sun Mar 29, 2009 7:42 am

I have learned that when you think you hear someone walking right behind you, it is not always so. Sometimes what you hear is the sound of your own numb foot dragging the ground.

8O
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Postby Loobie » Sun Mar 29, 2009 8:46 am

Mine started March 2001 at the USRA Regionals in Chicago; the day of my first flare of ON when hot and my first inkling. I literally can't look back before that and say "I know now that I had it for many years", I was truly blindsided. That 'never getting past it' thing is a theme that has alwasy resonated with me. Everything I do has to be tempered with that reality. Constipated? Listen to the ads and your friends and they have tons of advice. This works great, or that works great. But it's all for a little while. Can't sleep? Well these work great, or those work great, but they are all for 'temporary use'. So we have to figure out how to do things that we can keep doing forever. Someone posted a quote on here about Neal Cavuto, the news anchor with MS, and how he feels about his MS because he also is a cancer survivor. I'm not saying we got the Mac Daddy and everyone else just doesn't even understand, because everything is relative. But he was saying how he views MS as a lot harder to deal wtih than cancer. He was stating that with things like that you get better, or you pass away. He said, there is no over, there is no endgame here. And that's hard to deal with.

So every coping mechanism we find for a symptom or for pain, has to be managed with something that your body doesn't get used to. So what I've learned is what lots of others have learned. The best you can do is simply to take impeccable care of your diet, cardio, strength and everything else because that's all we CAN do. So we all get to live our lives in the healthiest fashion possible, but reap no benefits except maybe making it all easier; which I don't mean to sound trivial. The way I take care of myself now, I'd be a poster boy for diet, exercise, sleep, stress management, and so much more. But we don't get to feel great like we would have if we had chosen to live to this level of wellness without the MS. So what I've also learned since 2001, is that there is no Miracle Max miracle pill. We just have to live like a fitness expert, a nutritionist, a molecular gastronemist, and a wellness coach. All while being parents, spouses, workers and citizens of the world. I guess that's just our life now. We have more to deal with than the average bear. But one good thing has come from that. I simply don't have the energy to deal with stupid shit anymore. No more caring about things that would bruise your ego, or hurt your feelings a little bit. If it doesn't make a difference in the grand scheme of things, you can pretty much count of my not spending too much time worring about it anymore.

One thing I've also found out to this point in the 'umbrella' look that you have going Terry, is that I really like who I've become. I just wish I could enjoy it more! And one thing I'm really grateful for today is people like you Terry. People who have a ton of love in them and really understand and are very compassionate. Believe me, I for one was really not that way before all of this. But listening to people like you and all the others on here has truly left me feeling like you have all helped me grow and be less selfish. I wish I could have learned all these lessons while healthy, but I guess I needed struck upside the head with a brick. AND, better late than never :D

I think this is an awesome thread. Pool all of our cumulative "lessons learned". Everyone on here has something to share that they've learned, and I would love to see it all!
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Postby Terry » Sun Mar 29, 2009 9:35 am

My heart is with you, Lew. Hope this is a great day at your house.
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Postby Terry » Mon Mar 30, 2009 5:21 am

I have learned that no matter how bad I feel, there are many feeling much worse. So far, I've had it pretty easy.
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Postby catfreak » Mon Mar 30, 2009 7:21 am

Mine started February 2000 with Mono. I was working at a Bank as a Loan Officer (stress) and my husband and I did Photography as a hobby/second income. 18 hour days 6 or 7 days a week. We were making pictures of elementary school basketball players and teams. Imagine if you can 250 kids between the ages of 5 and 11, none of which listen to what you say and parents are worse that the kids. Trying to collect your money and we also printed all the photos ourselves on a 1 hour photo machine, package the photos and deliver (still trying to collect our money) Then I get freakin' MONO!!!

I went to the DR (who just happens to be on the board at the bank and his daddy is the President of the bank) He says yes it's Mono, but you can work, no need to worry. (ha)

Shortly after that the migraines started and I had to quit work for a few months. I went back to work in Oct of 2000 as a Mortgage Underwriter (more stress) and the headaches intensified. I ignored them as best I could and took every remedy that was suggested to me by anyone who gave advise.

Finally in December 2002 I had the headache to end all headaches and I went to work everyday. I brokedown and went to another Dr in town who accused me of drug seeking! :x He insisted that if I was really sick I would agree to an MRI. I had the MRI and he said I had a sinus infection and gave me some antibiotics.

When it did not get better I went to a ENT that I had seen before and he looked at my MRI and sent me for a CAT Scan. When he read it and told me there was nothing wrong with my sinuses and the only thing he saw as a diviated septum and maybe some small spots on my MRI he suggested I see a Neuro for possible MS. I ignored him for about a month. Until one day a customer was asking how I was and she told me I sounded just like her daughter, who has MS. You could have knocked me down with a feather. I called the ENT office and had his nurse look at my file and see if he really said MS??? She said yes, we were suppose to make you an appt and somehow that got overlooked.

Thus my journey for diagnosis began.......

Finally confirmed in April of 2008 after 5 year of Probable MS.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby AllyB » Mon Mar 30, 2009 6:45 pm

Terry, thanks for starting this thread, Lew, great post too, and Cat Frak - this is all making me think - not sure I have anything of value to add but am compelled to contribute anyway :lol:

My journey is also a little circuitous...I was diagnosed with bladder cancer at the age of 30 (this is know as an 'old man's disease'). I was lucky in a way, I knew enough to force doctors to take me seriously 'cos I knew something was wrong, so I was diagnosed relatively early. I have a T1 grade II tumour removed - not a pleasant operation...The treatment of choice was installing diluted BCG (the vaccine against TB) into the bladder to cause the lining to blister and peel, be inflammed, and in theory, get rid of any lingering cancer cells. Please be patient - this is going somewhere...I had had a Mantoux test for TB while working in a rural hospital in Africa (they inject a small amount of live TB bacterium under th eskin to se how you react, see if you have the disease or need a vaccine) and I had reacted quite violently to it. I mentiond this to my Oncologist as I was worried my bladder might react just as violently if she put that stuff in there, so she did another Mantoux test...Holy shit, that was bad. I reacted so badly, my whole arm was swollen with cellulitis, I had a fever of 41C, swollen lymph nodes, joint pain, rash, massive blister on the underside of my forarm where the injection was done - I still have a bd scar there today...Anyway, turns out I am hyper-immune to TB (consensus of several Prof's at the medical school) and the bladder installations would have killed me. I had chemo instead. 6 months of it. I read another post where someone quoted another person as saying that cancer is easier to deal with than ms because there is an end to it. Maybe so. But you know, I go into hospital every 6 months for biopsies of my bladder and I sweat blood while waiting for those results - and it has been 10 years, so not sure when it will end. No serious illness is easier than any other, they all have their challenges - at 30, I was faced with the prospect of having my bladder and uterus, ovaries, everything removed, even possible death if the treatment did not work - bladder cancer recurrs so frequently, you see. I was lucky that an op and 6 months of chemo got rid of it, but I live with it hanging over my head every day. Every time I pee, I look in the toilet, terrified of seeing blood there...It all sucks.

First thing I learned, always tell your doctors if something is bothering you, force them to listen if you have to - your life may depend on it.

Less than 2 years later, I presented with L'Hermittes. Told my Onco about it during a routine check up. She was worried about metastatic disease - a recurrance and spread to the spine, and referred me to a neuro for that. I was examined - had very brisk, and I mean very brisk, reflexes, could not lift my feet up enough to walk on my heels, my rt side was weaker than my left, I had some patches of numbness, and the L'Hermittes, which was the only one I was aware of. So, after MRI's & lumbar puncture - ms was diagnosed. Mostly cervical.
I remain convinced that my repeated and increasingly severe reaction to that bacteria somehow fu@ked up my immune system and triggered my ms...
I concur with Lew - I also have learned to take the best care of my body that I can. It is the only thing I can do that might somehow help, other than take all the medication the doctors prescribe, which I do, of course...I went on to have 2 children that I nevr thought I would have, they are a gift and a delight, and they teach me every day to see the wonder in the world.
I have learned that sometimes there are no answers, but I still ask the questions - you never know :roll:
I have learned that life is short.
I am learning right now that I am a walking (mostly) cliche and probably full of shit.
Guys, it is 3 am for me, I have had less than 4 hours sleep in 2 days, and I hope anyone who reads this has learned that patience is a virtue, as is kindness, and applies those lessons whilst reading my completely pointless (as it turned out) post 8O
Al
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Postby Lyon » Mon Mar 30, 2009 7:19 pm

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Postby AllyB » Mon Mar 30, 2009 7:24 pm

Bob, how nice of you to say so... :lol: But I was really referring to my supposed 'life lessons' and how trite they sounded as I trotted them out :wink:
Hope you and your wife are well.
xxx
Al
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Postby Terry » Tue Mar 31, 2009 6:11 am

Alley,
How are your boys? I'd love to see pictures to see how they've grown.

Today's I have learned...


I have learned that I don't smile or laugh nearly as much as I used to. I used to whistle without forethought, sing in the car, people used to tell me, "You're always smiling." A couple weeks ago I was at a restaurant with my kids and grandkids for a happy occasion and a man passed me and said, "Smile, it can't be that bad." I don't like this at all. Where did my fun-loving, positive, life is great attitude go? I want it back.
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Postby catfreak » Tue Mar 31, 2009 7:50 am

Wow,

Terry, how familiar this sounds. I friend called by husband about 6 weeks ago and asked if I was "depressed". I have always hid the pain behind the smile and I can't even do that anymore. That makes me depressed.

But, I have learned that we have to focus on what we can do and not what we can't do.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Loobie » Tue Mar 31, 2009 10:20 am

ALLY!!,

I'm glad you posted on here. I also love your avatar. You look like Kate Hudson with a red wig, rrrooowwwr! Anyway, your late night ramblings are never pointless. I've always valued everything you've had to say, especially when it comes to just living with this crap. I have missed you around here as of late and hope you continue to post.

Terry, CF, I'm sad to hear you have been feeling sad. I also feel that the general "emotional" malaese (sp?) is just something that comes with the territory. I'm going to be ultimately sad when I can't be pulled out of that state at all. I do miss just being "arbitrarily happy" all the time too. It sucks that it not only takes away physical things but emotional and mental too. I love you guys.[/quote]
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Postby GeoGuy » Tue Mar 31, 2009 2:57 pm

Ally! I'm so happy to see post from you.

What have I learned since my dx?

Appreciated the moments you enjoy, they can be fleeting.

Dizziness and numbness do not effect my ability to laugh (thank you
Hawkeye Pierce).

It helps to have a cute doctor!

MRI's are a great opportunity to sleep during the work day.

Excusing yourself to pee is a great way to get out of boring meetings.

MS sucks.

Even though I am trapped in a less than perfect body, my body is not me. If my MS gets to the point I have cognitive issues, then I'll get pissed, if I can remember to.

Jack
RRMS since 01/07.
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Postby Lyon » Tue Mar 31, 2009 3:18 pm

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Postby Terry » Tue Mar 31, 2009 4:51 pm

Jack, lol!!
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