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.

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The future of health care?

Aside

Today the visiting nurse came to do day 2 of my IV (love having her come to the house). We got talking about the state of health care and how quickly it is growing. She was telling me how her organization, Lifetime Care, is taking over a lot of smaller organizations from the outlying areas. The problem is they now need more nurses and there is no money in the budget for it. And since there are so many people on Medicaid, they basically get free health care.

I know what we pay and due to the meds I have to have and the number of doctor’s appointments I have, we pay a very high premium. How many people stop to think about those who are taking care of us? She told me what she makes a year and it made me sad. She makes a fraction of what she should and she has been a nurse for many years. I look at some of the jobs out there that are run by unions and the government and people are making way more than they should and driving our country farther down the tubes than it already is. I just had to share this because it made me sick.

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).

When do I grow up?

Yes, I know it’s been a while since I’ve written. I guess in defense of myself I can say I’ve been reeealllly busy. Why is it that the slower work is, the more we work? I feel like I haven’t had a moment to catch my breath.

On a good note I have to say my MS has been good (not to jinx it). I have been feeling a little icky these last couple days, but I think that’s because I have some stomach bug. I’m hoping there is a correlation.

But to my growing up question. As work ground to a halt I began rethinking my future. I’m 40 years old, and not sure where my future is headed. As I watched my husband stress over the slow home building industry I began to wonder about the future. Yes, I work. But part of what I do is working for him. So when he’s slow, so am I. So I began toying with the idea of going back to school to be a teacher.

I regret that I never did that to start. I did the things I wanted to do – I worked, started a business ( a few to be exact) but I always loved my time teaching. Maybe because I like to talk. So I started investigating what was involved in becoming an English teacher. I need credits, I need to go back for another Masters . . . all attainable. But this tenuous time in our world-schools are laying off, cut-backs are happening. Am I crazy to think of this now? I’m taking a class right now that I really enjoy, and it’s still got me thinking. But on the other hand, business is picking up again, so do I focus on that? I’m not sure what to do anymore. My heart tells me to pursue the teaching dream, but my head is telling me to keep things status quo, so I can be here for Matthew.

I wish I had a crystal ball to help me decide!

2010 . . . resolutions

Well, the new year is here. Came in with a quiet roar. It seems that most of what i have heard so far is “do we call it 20-10 or two thousand and ten?” I wish that was the most I had to think about this coming year.

Many new ventures on the horizon . . . hopefully they will lead me in the direction I need to go. I have some exciting things going on, and I hope that they work out.

Health-wise, I hope for continued success there too.

I always approach each new year with a positive outlook – figure it can’t be worse than last year. but for some reason, I feel like this year is going to be a good one.

My son and I wrote a list of our resolutions for the year. Share yours with us too!

Some of my resolutions for the new year:

Make more time for others
Take better care of myself – exercise, rest, etc
Make time for the  things I enjoy  – riding, painting
Enjoy my free time
Have more patience
Be better organized

My son’s resolutions:

Keep room clean
Read more (he reads more than most adults)
Practice my karate and soccer more
Love my family (not really a resolution, but why tell him that?)

It’s official

Well, I am officially out of my 30’s. Today is the start – 4-0, baby. I have mixed emotions about it. And for the life of me, I don’t really know why. Birthdays never bothered me before, but this one . . . this one seems, I don’t know, important. Like it’s time to grow up. It’s official. I remember as a kid hearing someone was in their 40’s and that was soooo old! Now that’s me!

But I’m going into it with a good attitude. Let’s face it, my 30’s weren’t stellar. Health issues abound, maybe this new decade will bring some good luck with it! The last day of my 30’s was a fog – going on 2 hours of sleep due to the meds from my last attack, I don’t really remember much of the day. Plus it was Friday the 13th so maybe that was the sign that I was leaving all of the bad luck behind in my 30’s. Let’s hope! So here’s to better days! They say 40’s are the new 20’s. We’ll see . . .

I have so many exciting things coming up so hopefully it will be good! Training the horse, work, etc. there are some exciting things coming down the pipeline, so I am officially saying that my 40’s are going to be the harbinger of good luck!

So there!

 

The new blog

OK, I finally did it. I changed the look of the Reality Chick blog. It was time for a change. Today is a snow day – considering that the kids have off for the next 2 weeks, this is an unwanted extra day! 17 days of vacation! It is already long!

Christmas is almost here and I am (not to jinx myself) MS-attack free! The first time in many years of not having the old ugly MS beast raise its ugly head. Is it the Tysabri? I think that is a lot of it. But I also think that having surgery in November forced me to slow down and not get so stressed. So maybe I’ll learn a lesson. Maybe I just have to have surgery every pre-holiday season! (Kidding)

I just want to wish everyone out there a Merry Christmas or Happy Holidays or just enjoy the season!

Disabilities and fair housing

One of the hardest parts of having an illness or condition, be it MS, or cancer or MD, lupus, blindness, Parkinsons, etc., etc., is finding a place that is easy to live in. We all have our issues, maybe it is stairs are too hard to climb, or parking is not close, or wheelchair accessibility is not considered. There are many more, but having an illness definitely brings its own challenges in terms of living.

One of the things I remember is shortly after I was diagnosed with MS, I approached my landlord and informed her that I had recently been diagnosed with MS. I was having trouble navigating the stairs and there were no “assigned” parking spaces and I often had to park on the street which is difficult in WNY winters.

She looked at me and said,”Sorry. Your lease isn’t up for another 6 months. You can’t break the lease.” And she walked away. At my tender age of 24, I didn’t know I had any rights and I didn’t know that I could fight back. Now I am a Realtor and I know about the rights of the disabled. I have included a brief synopsis of some of those rights below.

HUD REGULATIONS
The HUD regulations and the 1988 act contain the same general prohibitions against discrimination because of handicap. Prohibited actions under this section include:
• To discriminate in the sale or rental or to otherwise make unavailable or deny a dwelling to any buyer or renter because of a handicap of: (1) that buyer or renter; (2) a person residing in or intending to reside in that dwelling after it is so sold, rented, or made available; or (3) any person associated with that buyer or renter.
Reasonable Modifications
The 1988 act requires that persons with disabilities be allowed, at their own expense, to make reasonable modifications necessary for their full and equal enjoyment of the dwelling. A housing provider’s refusal to permit the modifications as required by the law amounts to discrimination based on handicap. Examples of modifications include widening doorways, installing grab bars, and lowering kitchen cabinets.
In a case involving a rental, a landlord may, where it is reasonable to do so, condition permission for a modification on the renter’s agreement to restore the interior of the premises to the condition that existed before the modification, reasonable wear and tear excepted.

Landlords may not increase any customarily required security deposits for handicapped persons, but they are permitted to negotiate a provision in the restoration agreement requiring that the tenant pay into an interest-bearing escrow, over a reasonable period of time, a reasonable amount of money to fund the restoration. The interest must accrue to the benefit of the tenant.
A landlord may also condition permission for a modification on the renter’s providing a reasonable description of the proposed modifications as well as reasonable assurances that the work will be done in a workmanlike manner and that any required building permits will be obtained

Reasonable Accommodations
The 1988 act requires that housing providers make reasonable accommodations in rules, policies, practices or services when such accommodations are necessary to afford a handicapped person equal opportunity to use and enjoy a dwelling unit. Examples of reasonable accommodations include allowing a person with a visual impairment to have an assistive animal in a building that has a “no pets” policy and allowing a person with a mobility impairment to have a reserved parking space near the apartment even though the complex does not have assigned parking.

Housing providers may not inquire whether a person has a disability or ask questions concerning the nature or severity of a disability. The following inquiries are acceptable, provided that they are asked of all applicants, regardless of disability:
1. Inquiry into an applicant’s ability to meet the requirements of ownership or tenancy
2. Inquiry to determine whether an applicant is qualified for a dwelling available only to persons with handicaps or to persons with a particular type of handicap
3. Inquiry to determine whether an applicant for a dwelling is qualified for a priority available to persons with handicaps or to persons with a particular type of handicap
4. Inquiring whether an applicant for a dwelling is a current illegal drug abuser or addicted to a controlled substance

Design and Construction Requirements for New Housing
The Fair Housing Amendments Act of 1988 requires that all covered multifamily dwellings first occupied after March 13, 1991, be designed and constructed with certain accessibility-enhancing features, including a building entrance on an accessible route. Covered multifamily dwellings include buildings consisting of four or more dwelling units if such buildings have one or more elevators, and ground floor dwelling units in other buildings consisting of four or more dwelling units. On March 6, 1991, HUD published the Fair Housing Accessibility Guidelines to provide technical assistance to builders, developers, and others in the development chain.

You can find more details on the websites for the ADA (Americans with Disabilites Act) or on the Fair Housing website. Know your rights and what can and cannot be done to those with a disability. I wish I had known more 14 years ago.

Hot Hot Hot

You would think I lived in Florida. I don’t. I live in western NY. But it is hot. And for those of us w/MS, these hot days feel like living in the depths of hell. I say that only half in jest. I went on Thursday and today to the Stuart Horse Trials. It is a big 3-day event that is held fairly close to where I live. There are Olympic riders there so it is an exciting thing to watch these horses and riders go tearing across the countryside and jumping these HUGE jumps. The bad part was it was HOT. And HUMID. As much as I love to watch this, I could only take so much due to the heat. As I watched these riders it struck me: I could never do that. Not that I want to, but it was the first time in many years that I had to admit that I could never be doing something because I couldn’t cope in this heat. And then to to it off I was talking to my saddle fitter and she noticed wear on the right side of my saddle. A lot of wear. it hit me again – that is my weaker side and it is obviously affecting me since I have a worn spot on the saddle. It doesn’t all bother me as much as it may have a few years ago, but being reminded of limitations or disadvantages is never easy. I am not one to admit to a weakness easily. But a small part of me was jealous of all of those riders who seemed to not notice the heat. 

Enough of my whining. It is a great event and fun for everyone, not just horsie people. Kids love to watch the horses galloping by, especially thru the water jumps. You can check it out at www.stuarthorsetrials.org.

Back to the blog

I offer my sincerest apologies to my readers! I know, the blog hit a hiatus. I don’t really have a good reason except being insanely busy.

First off, we bought a new car. To make an extremely loooong story short, we got pulled over about 300 ft. from the dealer when we went to look. Then the next day when we were driving there to trade in our car, it broke down and pieces were flying off of it. We had to get towed into the dealer on a flatbed. Then on our way home in the new car, we got pulled over again. That was how our April fared.

May was fairly quiet. School is winding down and I don’t know if it is just Kindergarten, but once May hits, the school starts preparing for summer! Last time I checked, there were still a few weeks til then, but according to them, it is time to relax!

Still doing boot camp. It still hurts and I still have sore abs from Monday. But I bought my first 2-piece bathing suit in about 20 years. ( the tags are still on it, so I can still return it)

Still riding. Willy is recovering nicely from Spasmotic colic that he had a few weeks ago. It was awful.

My barn hosted a horse show and the proceeds from our silent auction are going to the MS Society. So thanks to all of you who donated! It was a great success!

Next weekend, two friends and I are going to be in a festival “Artists in the Park”. We formed an art group: WNYWAG Western NY Women’s Art Group. It will hopefully be nice weather and a good day. i have been painting like mad and am rediscovering my love of calligraphy.

I haven’t been knitting too much for it seems we have something going on every night. I guess that is what nice weather is all about!

The next DVD from One Smart Cookie Productions is nearing completion. I’ll have it @ the replication house tomorrow for the final time (hopefully!) You can read about it on our website: www.onesmartcookieproductions.com

Other than that, that is my life in a nutshell.

Onto MS stuff, i was wondering if anyone out there on Tysabri is experiencing headaches. I have been getting them right after my treatment for about 2 days. But on the flip side, I have gone 6 months w/no attack! that is awesome for me!!!

I promise I’ll be writing more.I have so many things in the works so I need an outlet for my creative thoughts threatening to explode my head!

K