What’s Next?

I can honestly say I always have this sense of “unfinished”. Like I’m supposed to be doing something, something else. I try to head down a road that I think I’m supposed to and it seems as if someone or something always turns me around. So I’ve started dabbling in some things I’m interested in, and have been getting responses from people that I never expected. So we’ll see. But it just seems that the anxiety, the feeling of unrest, maybe it will go away? What am I doing, you ask? I’ve started making organic products (lotion, scrubs, etc). It wasn’t intentional-it was out of necessity. I was tired of how dry my skin was due to my meds, so I did much research, and investigating. So I said, why not? So I made my own, but have also given them to friends. But unexpectedly, everyone keeps telling me how they love what I made. It just feels nice to have create something that people like.Kind of like art. Being able to share what I can do with others.

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Onward and Upward

As you know, I have had a pretty craptastic year. (See previous posts) So I am ready for something new! Something exciting! Something fantastic! How can I be so happy? So upbeat? Frankly, I don’t f-in know.

Someone asked me that not too long ago, “How come you are so happy? You have had the year from hell, more than most people have in a lifetime and now you’ve been dealing with your back for 6 months (2 herniated discs, one bulging), how can you maintain this outlook?”

I answered her with this, “I don’t fu@king know. I just keep plodding along, doing what my heart tells me. I guess it’s not in me to sit around and mope. I just am not that type of person. I believe we have choices: we can choose to give up or we can choose to go on. There was just something on TV where some guy said it was proven that a positive outlook cannot help or change things. I think he’s full of shit. A positive outlook might not cure my MS, or my back, but it was as sure as shit keep me from playing in traffic. If I can’t push myself to keep going, what have I got? I find things to do that don’t involve hurting my back. I can’t ride, but I go and groom my horse, or I paint, do yoga, knit . . . until I am back on track, I have to find other things that i enjoy. And I think that’s the secret: don’t sit around, pissed at what you can’t do. Enjoy what you can. So that’s my secret!”

Then we poured more wine and had a laugh at ourselves, and at life.What we have is a gift: good friends, family, and the future.

A good day? Do they still exist?

Yesterday was “the bad day”. I had a horrible day, running around, work, etc. Finally, I lost it. The tears, the weeping, the sobbing. I am entitled to one losing-it per attack and yesterday was it. So today, was for me.

I started with getting my nails done. I never do that. I never pamper myself. There is never time! So today, I did. Then I met a good friend for lunch. It was nice to catch up and hear what he’s been up to.

Then I treated myself and him to cupcakes at Dolce Cupcakery. 3 for me, 1 for him. Maybe I’ll share with the family, maybe I won’t.

I also stopped into a new yarn store. For those of you who knit, you understand the nirvana that this can be. 3 skeins later I left, already planning who was getting what for Christmas.

As simple as these pleasures sound, it made for a good day. Yesterday is still knocking around in my head, but today is starting to fill up the space.

The worst year EVER!!!

I am so ready for 2012. To sum up this year. It started with a suspected appendicitis attack which turned out to be a health problem returning in my intestines that I have already had operated on. To continue, I then took a spill off my horse and suffered a concussion that lasted 2 months. So when I could finally ride again in March, I tore my rotator cuff. Then, when I could ride again in May, I threw out my back. Then when I thought I finally was over it all, I herniated 2 discs in my back, have another bulging and spent the whole summer basically standing. And interspersed in it all, my MS flared up 2x. So I think I can pretty much say this year has sucked and in a big way. I can count on one hand the number of times I have ridden. It is depressing to watch my friends all ride and show. I have had to cancel numerous events and plans throughout the summer.

But finally, some relief. Back injections are helping. Getting back to yoga (very gently yoga) and starting back on an exercise routine are all steps in the right direction. It may be a while before I get on a horse again. but I will. To be able to ride again will be great. But I wonder how long I can wait until I jump again? (thank goodness my doctor doesn’t read this!)

And so it continues . . .

So I now have 3 appointments with Neurologists. It is so surreal – I feel like I need to shop around, like for a car. This is someone who holds my future in their hands. Yes, I try to be proactive. Yes, I try to be informed, but a doctor is who we look to to give us advice, prognosis, all of that stuff. I want someone to tell it to me on the straight and narrow, no sugar-coat, no babble. Just tell me what to expect and let me forge ahead. I guess it wouldn’t bother me so much if I wasn’t in the middle of having an attack – it feels like I am under the gun to find someone right now. But I guess that’s good . . . I call around to suggested doctors, and I am getting tired of the same “you can see the PA”. No offense, but for my first appt, I really want to see the Dr! I have heard this at least 3 times already.

It is frustrating because my doc, as he is telling me to find someone new, is also telling me I am now in the ‘danger zone’ for the meds I take and might want to consider switching. What??? This drug (tysabri) has been my lifesaver. I truly believe without it, I wouldn’t be functioning as well as I do now. So let’s just throw that into the mix.

But enough of my bitching. I looked around me at the waiting room the other day and saw all of these people, waiting for news, help, comfort. And now they’ll have to look somewhere else. I have seen him for 17 years. Close to 1/2 my life (give or take a few years).

And the world shifts

I went to my Dr on Tues with what I am thinking is a flare up of my MS. But before we can even get into talking about symptoms, etc., my doctor of 17 years, someone who I think of as a dear friend tells me he is probably going to be closing the office down. He gave me a few reasons: he has a large infusion center (4th largest in country) and possibly all of this patients he has on Tysabri (and other infusables) maybe created a red-flag with the insurance cos. The insurance companies are definitely playing God with all of us. Now, I don’t know the whole story, but I do know that Dr. Smith did right by his patients and he lived for his work. His aggressive approach toward my treatment was a life saver. I honestly believe I would not be walking, riding, playing with my son if it weren’t for his unwavering belief that there was something that could help.

So now I, and hundreds of others are in a mad dash to find a new neurologist. I am sad to see the end of this journey but I need to look on the bright side and realize I’m heading down a new path with a new sherpa. Maybe a new opinion or thought will benefit me as well.

So I sit here, pounding this out @ 4Am (the battle of the steroids and the sleeping pill ended about 3:30) Steriods: 1 Pill: 0

but this added stress on top of the attack I’m having isn’t helping. If anyone has any input on a good neuro, send it my way.

Back to the blog

It’s been a while since I’ve posted anything about me, personally–about MS, about what life is like. I got so wrapped up in the lawsuit from our elected official (see previous posts) that I guess I was able to put the rest on the back burner. And maybe because I haven’t been noticing it as much lately. But that’s probably because I’ve had a concussion that has occupied my time! But I’m noticing a few nagging sensations and was surfing around and came upon this great list of MS bloggers:
http://msblogcentral.blogspot.com/

The woman who created that blog (Brass and Ivory)  has always been great about keeping all of the MS bloggers in touch and connected. If you know of anyone, this is a great resource. We are not alone!

The Voice of Thousands – we’ve got the power

In the aftermath of the Jim Alesi debacle (for those of you who haven’t heard, due to the pressure, he dropped the lawsuit), I’ve had time to talk to many of our supporters. First and foremost, we all want to say a very heart-felt THANK YOU to everyone who contacted us to tell us we had their support and to tell us the outrage this whole debacle caused. It was incredible – the number of emails, text messages, phone calls we received – from people we knew and from many we didn’t know. And I came to realize the power that we have if we all speak together. The whisper of one person quickly becomes a deafening roar when there are thousands. Tens of thousands. We had emails from all over the country and even the world. We received one from Australia! Apparently injustice isn’t just a regional issue!

The media was critical in this colossal mess. The blogs, the articles in papers, the websites, the radio . . . the list is endless. The reporters and radio hosts were so important in delivering the message. The term “viral” was used regarding the maelstrom of emails and comments. I will admit, it was amazing to be a part of the media storm, in fact to be in the center of it. I had no idea what a tidal wave it would create. Maybe I should say tsunami! From one blog post that I put on here shortly after we learned about the lawsuit to a post on FaceBook  to the thousands of websites that quickly became devoted followers of the case. (We had over 5000 hits on our website the first day).

I saw first-hand that the whisper of only one person quickly becomes a deafening roar when it is thousands of us. Tens of thousands. Through our words, by making that deafening roar, we stood up to the powers-that-be and we made a difference. And if feels amazing.

Rachel Barnhard at 13WHAM wrote a great article:

Did Social Media Play Role in Alesi Outrage?

More about Senator Alesi

My husband was interviewed by the Albany Times Union and this article has a few additional details. The writer here names the person who was with the Senator when he trespassed. Apparently, she was a Senate Director of Operations. You can read the article here and please pass this around. This is getting exposure not only around the country but around the world. Everyone is appalled at what our elected officials can and will do!

http://www.timesunion.com/default/article/Senator-s-slippery-lawsuit-973609.php

 

More coverage:

http://www.whec.com/article/stories/S1936623.shtml?cat=0

http://www.13wham.com/news/local/story/Senator-Alesi-Sues-Couple-that-Declined-to-Press/LCflMQQFr0qttwDf_dAapw.cspx

http://rochesterhomepage.net/search-fulltext?nxd_id=228986

http://www.democratandchronicle.com/article/20110121/NEWS01/110121004/James-Alesi-sues-over-broken-leg-at-construction-site

More Alesi info

If any of you are looking for MORE info and coverage on the lawsuit from Senator Alesi, search “Alesi trespassing.” Or any variation of that theme. You will be amazed at how many sites, blogs, and comments are out there. We have seen thousands of comments from not only our country, but from as far away as Australia! And  you’ll be hard-pressed to find one that is not supporting the Heckers and DiRisio Builders.