Hi from Cali

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Hi from Cali

Postby Drgnlny » Mon Apr 06, 2009 9:57 pm

Hello - I just found this site and thought I would check it out.

I've been dx'd w/RRMS since July of 03; according to my Neuro - he believes I had episodes dating back to 1994.

I spent a few years with 'mysterious' symptoms that would appear and disappear and the docs could never figure it out. Some of the possible dx were Petite Mal Seizures, Tendonitis, Rheumatoid Arthritis, sore muscles, stress and I'm sure quietly in their minds - hypochondria!!

The day I rec'd my dx I was somewhat relieved to know I was not crazy and there really was something really wrong but also extremely scared and for some reason - embarrassed to have to tell my family, boyfriend and friends. I actually didn't know what MS was - the first thing I thought was Jerry's kids - but that's Muscular Distrophy.

I was scared because my Neuro said to me within the first 5 minutes of my dx in a very 'cheery' manor that I wouldn't have to worry about needing a wheelchair for another 20-30 years. What??? A wheelchair?? I quickly calculated 30 years on my age and realized I'd be younger than my dad was - and he's still dancing away a couple times a week - and I would be in a wheelchair?? He said it with such finality but I could tell he thought this was 'good' news!

Well, there's been a lot of ups and downs since then!

But I'm still full able to do most things - I do have limitations due to weakness on my left side, extreme fatigue, and heat sensitivity. Although I can't do things like skiing, rollerblading, etc - I can still live a pretty full life. I have my better days and then some when I can't even get out of bed.

I work from home full time now; have a young daughter and am single in a complicated relationship. Ah...such is life.

Right now - I'm on a good track - feeling better, having more energy, better mental frame (depression is another issue) and that's why I'm exploring the web - I've got the energy to do it!

Anyway - glad to find this site. Looking forward to getting to know it better.

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Location: california


Postby Terry » Tue Apr 07, 2009 6:21 pm

Welcome Drgnlny.

There is much to learn and I believe this is the very best place to do it.

Hope you continue on your good track!

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Postby lmacalus » Wed Apr 08, 2009 8:57 am

Welcome - I'm new to the site too! So far folks have been very helpful - always nice :)

I completly know how you felt to have the diagnosis that was "NOT CRAZY" - even my own parents had been accustomed to saying "What is it now? Boy, were there guilty feelings all over that one!

Hang in there & keep the faith, now that you know what it is, you have options, smile as often as you can & enjoy your children... mine keep me going on days I don't want to & laughing & learning & experienceing things... instead of shutting myself in the house all the time. They are also GREAT for huggs and giggles.

Be well,
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Thank you =)

Postby Drgnlny » Wed Apr 08, 2009 7:26 pm

Thank you both for the warm welcome!

Boy - that is something I've really struggled with - locking myself away. I've been very isolated ever since I started working from home full time. It is a blessing in that I can keep my job!! But I never thought I would become a shut in and that's what I feel like most of the time.

It is good when I have my daughter because I HAVE to take her to school and pick her up and be here for her. I do feel guilty for all the times that I'm really not able to do very much but the barest minimum to keep us both going and for the days where my mental wellbeing is - well, far from 'well' at all.

My mom is no longer here - she passed away when I was 23 - otherwise I know she would be here kicking my butt and not giving me the choice to pull away. I hit a bad pit of depression when I was 19 and she would come over and literally drive me around at night (I got really weirded out at night - what can I say I was psycho I think!) and just would not leave me alone - so I never had the option of isolating myself like I have.

As for my live in love of many years - well we aren't together any more but still live together and still are close friends. But I struggle with this big time because it wasn't my choice to end things after 6 plus years and he apparently doesn't know what he really wants because he's still here 2yrs later but yet we still aren't back together. 8 years into my life with him I'm starting to really freak out about wasting my life away like this.

It's all a very long and complicated story I'll save for another time maybe. But because of that situation - I don't have the same kind of emotional support I used to and the whole break up/aftermath/current limboland has contributed significantly to my depression and being sick - it's like a vicious little circle. I finally found a way to snip the invisible emotional tie between me and my body and have thankfully stopped making myself so sick from it all.

But my friends and the family I still have all are married and have their own lives and there just isn't the kind of close knit network of support I've always had up until the recent couple years. It's hard because I can't join them often due to my health problems but they don't really ever come see me or call me - and I think it's because of the stupid situation I'm in with my estranged bf. If I make a point to call and invite them to do something - they will come. But otherwise, there's rarely any initiation of contact from them and that kinda sucks.

I suppose I didn't notice as much when my love life was all fine and peachy keen.

So I'm at a really weird place in my life and I'm not really sure how to dig myself out of it. I know I have to be the one to take action so I'm starting by finding online support. And am trying to find ways to involve myself in real life things that I am able to manage. I have to be careful - I will commit to things when I feel 'good' and then suddenly when things go down hill I can barely get the thru the day let alone anything over and above that. So I'm trying to find a happy medium. I think I got scared of flaking at stopped committing to anything - because I never felt sure I would be able to show up.

OMG - I have really rambled on!!! Ikes... :roll:

Well - not only do I have MS, but I AM A MESS! LOL - But I'm still cocked and loaded with my sarcasm and dark sense of humor - they have gotten me this far!

Thanks again for the welcome - I'm happy to have found this site. :D
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