New and Blue

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New and Blue

Postby Juley » Sat Apr 13, 2013 8:29 pm

Hi folks. I've been fighting with myself in coming here. I think a part of me thinks this is all a bad dream and I'm going to wake up good as new and if I fail to give this any steam, it will just go away. (Can't blame a gal for tryin'!)

So the about me bit:

I'm a 33 married mother of eight year old twins. I was diagnosed with MS in Sept of 2012 after having an MRI to find the cause of the trigeminal neuralgia (TGN) I was suffering.

For anyone not familiar with TGN, it is most intense pain I've ever felt in my life and I had two kids! It's like someone is trying to remove your eye with a dull spoon, give you a root canal with no freezing, cattle prodding you in the jaw, and hammering a spike through your ear all at the same time.

I've had a whole host of other fun symptoms like issues with memory, extreme fatigue, muscle spasms, tingling and numbness in various parts of my body, and depression leading to an attempt to take my own life.

I am currently in a double blind drug trial with Ocrelizumab and Rebif so I'm on one or the other but of course, I'm not sure which. I am on a leave from work as well but maintain my numerous volunteer activities where I can. As I am sure most of you do, I struggle with the daily symptoms and the more significant relapses.

You see, I've always been a strong, competent and capable person who never let anyone down. Now for once in my life, my tough nut shell has cracked and I feel weak and broken. I cry - a lot! I still haven't given up a lot of my extra activities though because I don't want to give into this disease but there are some days where I just don't have the gas to make things go.

My biggest struggle is dealing with some of my family and friends. My husband and children have been very supportive and understanding but I am suffering an extreme level of guilt and shame for what I've put on them. Some people tell me it's mind over matter and I can get through this by donning a more positive attitude. Some days I see merely getting out of bed a victory. Some see me as lacking fight. Some think I just make excuses. Am I or is having MS really as challenging as I am finding it? Am I handling things wrong? If not, what do you say to these people?

Thanks for taking the time to read my plight.
Juley
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Re: New and Blue

Postby Chrisomate » Sun Apr 14, 2013 4:38 am

Hi Juley, your post sent a shiver through me as it sounded so familiar to my experiance. Your doing the right thing being on the trial as it worked for me. I was diagnosed in 1994 with progresive remiting MS after falling off a roof at work, the injuries just didnt seem to go away. Within 6 months I was unable to feed myself and was advised by my neuro to go buy the chair with the big wheels asap. I lost my girlfriend of six years, my job and my house to mounting debts and could see no light at the end of the tunnel. Got so depressed I made a decision to leave this world before I got to a stage where I couldnt throw the noose over the beam. I was getting pretty bad but in 1998 was offered the chance to trial a new drug- Rebif - and luckily was in the half that got the real thing.
It took years of jabbing myself in the leg and backside with this stuff but eventualy my symptoms started to decline and my attacks less frequent and severe, I sought advise on diet and lifestyle changes but above all I decided to fight it by any means available. Nearly twenty years later Im 50, am walking well with a new career new girlfriend and two beautiful daughters. I havent had an attack since 2008 and although I live with the damage the MS has caused I have learned to deal with it and accept it. I lost my mother when I was 26 to kidney failure bought on by the drugs she was given to treat her cronic arthritis, the same drugs they give us MS folk so I am very familiar with the difficulties of having a loved one ill and how to relate to it. In the begining I told no one of my illness but that does not work, eventualy if you are close enough to them they will find out and wonder why you decided not to share this information with them and seek their sympathy and advise. People are funny like that.
Now I tell anyone I think may need to know and damn the consequences.
My girls have seen me hooked up to an IV getting chemo and it doesnt change anything, they still love me regardless. When I have a beer with mates and have to go to the bathroom every ten minutes or walk into a wall on the way they give me plenty, but its all light hearted fun and that is priceless for me.
Julie dealing with any illness and its concequences is a life changing experience for you your friends and family but that is life and thats what they are there for. I went through the guilt thing for a while too though I didnt have the girls then I felt I was letting everyone down which in hindsight seems pretty silly. This thing is just too random to have the word guilt attached to it. Seek sympathy when you need it, I still accasionally shed a tear at the bum hand I got dealt and I am lucky I have someones shoulder to do it on and I do feel better for it. MS is something we will have to live with the rest of our lives and there will be good days and bad ones you can count on that and getting used to that idea is one of the biggest chalenges we face.
If I can give you any advise Juley its to take an active roll in your treatment and recovery. Seek knowledge from the right places(this site for example) decide for yourself if that advise could work for you and involve your entire world in getting to a good place. Your in for a bit of a wild ride but have faith in yourself and your doctors there is hope belive me I am an example of that. I truly wish you the best Juley. Chris. Sydney Australia.
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Re: New and Blue

Postby want2bike » Sun Apr 14, 2013 7:09 am

When you speak of having problems in the mouth I am reminded of root canals. That was a problem I had and once I had them removed I got better. If you have root canals that could be the problem.

http://www.youtube.com/watch?v=LOy6Zu_E ... re=related

http://www.youtube.com/watch?v=B0WWXzJu ... re=related

http://www.whale.to/d/meinig.html
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Re: New and Blue

Postby lyndacarol » Sun Apr 14, 2013 10:11 am

Welcome to ThisIsMS, Juley. I am so glad you decided to join us. With the MS diagnosis so recent as September, 2012, you have so very much "newness" to deal with! You say, "I've always been a strong, competent and capable person who never let anyone down." I see no sign that you are letting anyone down NOW. In fact, I'm sure you are still strong, I'm sure you have passed that trait on to your twins. In addition, you are giving your husband and children the chance to learn compassion, understanding of another's situation and feelings – your children will have a kindness, a thoughtfulness, and an unselfishness that many others lack.

MS is a major challenge; you are handling things quite well (as I see it); you cannot change the behavior of some people – they will never understand – they will always have thoughtless comments. This MS experience will sift out your sincere friends and family; energy is dear when one has MS – don't waste your energy in trying to educate those who don't want to learn.

I also welcome Chris, who is so very eloquent in stating what many of us here feel. Your girls must have learned so much from you – the same kindness and empathy that Juley's twins are learning now from her. This community at ThisIsMS will benefit greatly by having BOTH Chris and Juley here!
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Postby tiffwashington0210 » Mon Apr 15, 2013 3:45 pm

Hi everyone my Name is Tiffany. I'm a wife and mom of 2 girls!! I got dx in Febuary of 2010. and As of right now i'm not on any MS meds only my muscle relaxers and antidepressant and doc is ok with it.. I'm from Cleveland, Ohio!!
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Re: New and Blue

Postby lyndacarol » Mon Apr 15, 2013 7:22 pm

Welcome to ThisIsMS, Tiffany.

I do not use any of the MS medications either.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: New and Blue

Postby Cholderby » Tue Apr 16, 2013 1:09 pm

Hi Juley! I'm new to both the forum and ms and a mom too. I've already had to change quite a few things about parenting because of ms and I've only had one flare up. I have to wean the baby to go on dmds, and I've actually enrolled the toddler in preschool for next year (a big deal since we homeschool). The older kids are going to do a drop off program closer to home instead of our beloved co-op next year. They're not terribly happy about that, but I can't hack either the work or the drive any longer.

Any time your kids see you dealing with adversity (ms or otherwise) you are modeling for them how to handle real life. Try to modify what you can without giving anything up.

Chris - 8O I'm so sorry, but I'm glad you're doing better. That's some serious stuff.
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