Friday, September 30, 2011

Yesterday

Wow! What a week this has been.  I was still dealing with the crazy lazy contractor for most of this week. He didn't finish our house completely until Wednesday. That was eight days of craziness! Oh the stress of it all!!! It was really starting to take a toll on my body. Thank the good Lord that is done! Seriously!! I've added some pictures below of the finished project.

Yesterday I woke up with a promise of a better day.  It had to be, right? With no contractor to deal with it should be fantastic! I was wrong, of course. I took L down to the bus stop, with doggie number two, and realized that I had locked the door behind me with my keys inside. And we have no back up key outside. So I had to walk to my friend's house, who lives close by. It takes around two minutes to get there by car and about ten or fifteen minutes to walk depending on how fast your walking.  Usually it would have been a semi nice walk. However, yesterday I had to walk very very quickly because of the intermittent spritzing that was going on.  (Yes, I just used a foreign word for those who are not Pennsylvania Dutch! When I say "it's spritzing" outside it means "it's sprinkling" outside.) So the walk was not enjoyable for me at all. And being the klutz that I am I, of course, fell at least once on the walk over. The end of the story being that I ended up spending the rest of the morning with my fabulous friends and my husband saved the day by coming home on his lunch break.

In the afternoon I went over to my daughter's school to take part in their volunteer program, the Parent Academy.  I spent the afternoon copying, and dye cutting fall leaves for the teachers at the school.  It was wonderful to see how appreciative they were of the work that I had done.  But it was also hard work since I had to stand to copy things and then use my arm muscles to work the dye cutting machine.  And after all that work was done I walked all over the entire school handing out the work that I had finished to the teachers. It was a looooong day! I was so tired in the evening that I completely fell asleep on the couch when my daughter was watching her favorite show.  Which left me feeling like I got no time with her at all. :o(

Today I've woken up super sleepy, incredibly achy, and have just about no energy this morning.  In my books, when that happens that means I am crazy emotional until I get more sleep. And it's not just rational things that get me emotional.  We're talking stupid things.  Like the fact that there's laundry that's bugging me and I can't help my husband do it.  Or the fact that I finished a book that I love and I can't buy the next one until it comes out.  Crazy stupid things! So far the only semi rational thing that I've been emotional about is missing my daughter today since I barely had time with her yesterday. Oh, and the fact that I am worried that I will be majorly tired like this every day once I get a part time job. I'm trying not to think about that (or my health) at the moment because that would just be emotional overload!

I am being completely honest when I say I wouldn't even want to hang out with me today! Because I am just that emotional! Hoping tomorrow will be a better day!



Sunday, September 25, 2011

Letters of Dissatisfaction to Hershey Park

I was so worked up after writing my blog post last night that I immediately went over to Hershey Park's website and wrote them to let them know how I felt about our experience yesterday.  (It was rather heated and I should have probably waited til this morning to cool down first.) I've received a response and written back to them already because I feel as if I just got the typical "the brush off" response from them.  So below I am posting our communications....


My original e-mail to Hershey Park...


"I wanted to share that I am deeply disappointed in how you handle the parking for customers with handicapped disabilities.

Today as we drove into the park we were told that we were not allowed to park in the handicapped parking lot due to a band competition. When we asked where they suggested we park we were told to park in the regular parking just like everyone else.  I told the gentlemen that my mom could not walk that far and we were told to take a tram.  How, may I ask, is that handicap accessible in any range of the imagination?? My mom's needs are addressed quite well within the park with lots of shade and many benches to sit and take breaks on. However, I can't even imagine how a person who is actually in a wheelchair would have managed parking in the regular parking lot and taking in a tram!! And the security guard never questioned what my mom's disability was too see whether she needed to use a wheelchair.

This experience has proven that "handicapped accessible parking" is only a theory at Hershey Park and only made available when it's convenient to the park to provide it. I am deeply appalled that this would happen at a park that's main advertising touts that your park is family friendly. Apparently that is only for healthy families who do not have the disabled within their family units. "



Hershey Park's response...



"Thank you for taking the time to write to us regarding your recent visit to Hersheypark.  Without honest feedback from valued guests, such as yourself, we cannot improve our operation.  Although we strive to provide our guests an exemplary experience with every visit, we greatly appreciate being made aware when we do not meet that high standard. 

I would like to apologize for the way you and your family members were treated by one of our staff. We strive to ensure that we provide adequate parking arrangements for our guests with disabilities. Unfortunately our regular ADA accessible parking area had reached capacity during this day and our parking areas closer to this area were reserved for a High School Band Competition. Our staff should have better explained to you where there were additional ADA accessible parking closer to our tram loading areas. 


We encourage our staff to not ask questions about someone's disability or challenge someone who has an ADA accessible parking placard due to violating there personal rights and the uncomfortable situation it may place our guests in. Our tram service is equipped with ADA accessible seating and our tram stops do have benches in place for our guests to sit and wait for the next tram. 


I can assure you that we will continue to teach, train, and coach our staff on how to properly direct our guests with disabilities to the closest or most accessible parking areas. I apologize again for the opportunity that you endured and hope that you choose to visit us again in the future.
Sincerely, "
  


My response to this email was this...


"I am highly disappointed in your response to my e-mail.  By holding the closest parking area for a band competition Hershey Park is placing those patrons above the needs of the disabled public. The message that families with disabilities receive is that they can have closely located handicap parking only when it's convenient for Hershey Park. That does not seem OK to me. Despite the fact that there is another handicap accessible area near the trams does not make this right to do. As far as the benches are concerned, yes there are benches, however, I don't feel that you can claim that they are enough for the disabled patrons.  The benches are full at all times and we are not able to use them. Perhaps Hershey Park should consider marking one of the benches as a handicap bench so that they would actually be able to use them.

Sincerely,
Kristen"




It will be interesting to see how they respond to this next e-mail.


Saturday, September 24, 2011

Handicap Accessible


How handicap accessible is the handicap accessibility at a public place? I guess that is left up to the discernment of each individual business and how far they are willing to go for their handicapped clientele.

My husband, L and I took my parents with us to Hershey Park this evening.  We needed to get out of our house and away from the great big mess that it is! We were looking forward to a great time but hit a snag in our plans before even getting into the park.

My Mom has many auto immune disease, which combined, prove to make walking quite difficult for her at times. Because of this she has a handicap card that she uses, on bad days (like today), when parking at businesses. When she goes to Hershey Park she especially needs to use the handicap card because she does so much walking inside the park that she often can only make it to the handicapped parking and no farther. She makes it to the car with a bright red face, her jaws clenched in pain, her hands shaking, and promptly collapses in the car.  She knows all the walking is bad for her, but she is like me and is willing to push herself to do fun things with L.

Today as we drove into the park we were told that we were not allowed to park in the handicapped parking lot due to a band competition that was being held at the stadium beside the handicapped parking lot.  So they commandeered that parking lot for the guests of the competition.  When we asked where they suggested we park we were told to park in the regular parking just like everyone else.  I told the gentlemen that my mom could not walk that far and we were told to take a tram. So we would have had to stand and wait like everyone else for a tram.... for about ten minutes... in the sun... with no where for my mom to sit. How, may I ask, is that handicap accessible in any range of the imagination??  And our issues were minimal, as in we can't be in the sun too long, or stand for long periods of time. (Those problems are addressed in the park with lots of shade and many benches to sit and take breaks on.) I can't even imagine how a person who is actually in a wheelchair would have managed parking in the regular parking and taking in a tram!!

We ended up circling back around and finding a way to park in "band competitions parking lot", despite my daughter telling me we weren't allowed. I felt like I had to break the rules, which I feel guilty about doing now. However, I am also deeply disappointed that this would be the only option that the park would have made available to handicapped people. I am so mad about it that I think I will be sending a letter of complaint to the park. Because I know if we had problems with this, there were certainly others who were inconvenienced even more so. 

So how handicap accessible is Hershey Park? I would say they are only handicap accessible when it's convenient for them. What are your thoughts on my experience and this issue???

Friday, September 23, 2011

The Floor


I've had a bad week!  The flooring, which was supposed to take three days has turned into a five day maybe six or even seven day process. I am not happy about this people! Not happy at all! Originally we were planning on asking a couple of people to help us install the floor ourselves.  We decided to opt for "professionals" to come in and install it instead thinking that it would get done faster that way. Ha! Boy was I soooo wrong.

So far since Tuesday I've dealt with....

*Missing products not once but twice. Which delayed the installation process in some way or another both times.
*Late workers, who took hour and a half lunches and then left early.
*MIA bosses who didn't really seem to take me too seriously until my husband got involved.
*Lots of lame excuses.
*A hole in our kitchen wall. (It looks like they were playing football and someone missed a pass!)
*A kitchen counter torn off of it's cabinet base.
*A heat register that was torn off the wall with gouges in the drywall surrounding it.
*Millions of layers of ancient flooring in our kitchen because apparently every owner of our house before us has done half the ob by just placing the new flooring over the old stuff.  This resulted in more work for the installers and a bigger price for us.
*Broken laminate, which seems to be the fault of Lowe's? That's questionable about why it wasn't inspected.
*Dust everywhere. I mean every-freakin'-where!!!!  It's covering everything.  The toys, the computer desk in the living room, the fridge, the couch. Everywhere. They apparently covered nothing with drop clothes before starting their work. So even my poor little bowl of fruit is covered in dust.
*The flooring installation manager from Lowe's was out to see the damage and was very upset.  Resulting in an assurance that everything will be fixed.  As well as a partial reimbursement to us.
*And last, but certainly NOT least, two minutes after the supervisor left one of the flooring installers ran his hand through his saw.  Needless to say he is now prepping for surgery, as I write this, to do reconstructive surgery on his hand. Yikes!

So the job is still not done. The flooring guy hurt himself within an hour of being here this morning and they left right away. Needless to say all of this stress is not helping my health! Once the men left this morning I sat down and cried.  Hysterically. Like, ugly, snot all over my face kind of cried. Into the rag that I rushed to get for the installation man and I was too late to give to him because they raced away.Wow, what a week! I would SO SO SO love to have a drink. Drat my medicine and the problems I would have with my liver if I indulged in even one drink! At least I have my friends to cheer me up tonight!!!

Enjoy the pics.  I keep telling myself that someday this will be a very funny story!



Wednesday, September 21, 2011

Houses

We're having new flooring installed in our house this week.  I am so SO excited to see the finished project.  I think it will look a thousand times better then the business grade carpet that was installed by the cheap guy that owned our house before us. I cannot wait! The choosing of the flooring was a crazy process.  First we had to choose if we wanted hard wood, laminate (which is a synthetic but looks like hardwood), stamped cement etc. After that was decided then I had to find the perfect looking laminate flooring that didn't cost too much.  Because it never makes sense to put more money into your flooring then you will actually get back when you sell a house. Which we needed to take into account since we plan on moving in five years or so. I finally found the perfect one at a great discounted price since they were discontinuing the product. "Yay me", for asking for what I want!!

Anyway, the thought of getting our money back when we sell our house brought me to think about buying a new house. On a good day, with "normal" people, the prospect of buying a house can be daunting and never ending for a couple.  Add to the mix a person with special health needs and you make it even more difficult. For instance, if I were healthy we would only have, give or take, about three key things that we would be looking for in a home. My list would look like this...

*The school district being the first.
*Two bathrooms (Who likes to wait for a bathroom right?).
*A big enough driveway or yard to hold our camping toys (a camper and boat).

However, I am not a "normal" person so I have additional needs to worry about. (Especially since we are planning on staying in our next house for years and years to come.) Because my disease is progressive, I will be dealing with it for the rest of my life. New problems will pop up that will cause my family and I to find new ways to deal with the issues. So we will have to take into account the possibilities that could arise with my health in the future. Such as, the possibility that I may not be able to navigate stairs in the far off future because of the Sjogren's arthritis in my knees.  So my list will look like this...

*Ranch house.
*Or at the very least a house with the main bedroom on the first floor.
*Laundry room on first floor.
*Or the capability to build a laundry room into the first floor somewhere.
*Possible open layout if for some reason I would need a wheelchair in the very very far off future.
*Possible larger door ways in case of wheelchair.
*The possibility of adding a ramp to the front door in case of a wheelchair.
*Room in a shower and bathroom for safety rails.

Sheesh! I am so glad that we've got awhile before we have to start that process!!!


**UPDATE**

Here is our living room looks like so far. Yay for pretty floors!



PS- This was not meant to be a pity-poor-me-I'm-so-dramatic-I'm-gonna-be-in-a-wheelchair-some-day-post.  I was merely trying to expound on the possibilities that I have to take into consideration for my far far off future when my husband and I begin to look for a house. I freaked my mom out when she read this post so I felt the need to clarify! :o)

Sunday, September 11, 2011

Epiphany

Back when my husband and I started dating I was pretty much a "go with the flow" kind of girl.  If I woke up in the morning and a friend wanted to take an hour and a half drive to get ice cream at a super yummy creamery I'd say, "Yeah! When are we leaving?!?" I didn't pack and I didn't plan.  I just went.

Nowadays it's a whole different story. I deal with anxiety if I don't have plans when I know I am going somewhere. I've even been known to write my plans down on a post-it and hiding it in my purse to sneak furtive looks at later. If I am with people who don't like to plan things I become nervous and anxious about what we'll be doing. I've come to realize that I feel compelled to plan so I can be prepared for whatever we may do. I am always the one with a pack of wipes for a dirty hand, band aids for a cut knee, and snacks for a cranky kid or a hypoglycemic attack for myself. I feel naked if I don't have a bottle of water. And I'm ashamed to admit that I even have a mini flashlight in my purse!

I do admit, that sometimes it can go to extremes and I've just figured out why.  It's because I feel as if I have some semblance of control in my life when I plan.  Because with Sjogren's I never know from day to day how I am going to wake up feeling.  Which does not allow for any planning. For that matter, I never know from hour to hour how I am going to wind up feeling depending on the activities in store for the day.  So when I plan for most eventualities I feel in control of my situation. My health, one might even say.

So, here's to the first step....acknowledging it.... Hello, my name is Kristen and I am a control freak.... With good reason in my thinking. Anyway, this gives me a lot to think about.  So for now, I beg your pardon in saying, you're just gonna have to deal with it!

Remembering

Today is a day for remembering....






and for being thankful.

Wednesday, September 7, 2011

Flooding

We've had an amazing amount of rain in the last few days.  Like, we're talking almost non-stop rain.  It's all from the tropical storm that caused so many problems down south. Only it's not a tropical storm any longer but it's still causing problems.

We're under water at the moment.  Not our house, fortunately, but roads everywhere. Our county has declared a state of emergency until further notice. So we had early dismissals and kids stuck in schools overnight without parents. Building have collapsed and so many roads are unpassable. My husband is stuck at work at the moment.  The hospital he works at has declare a state of emergency.  So he's stuck worrying over their computer systems for the moment.

Here are some photos...








Tuesday, September 6, 2011

My Ride Through Lowes


On Sunday evening it was time for me to up my dosage of Methotrexate. Needless to say my body did not appreciate this. Yesterday morning I woke up nauseous, with a headache, shaky, and so so SO weak. Unfortunately, feeling like this did not stop me from having some errands to run in the afternoon. Against my best judgment I decided to go with my husband on the errands anyway.

In the car on the way to Walmart I was not feeling well at all.  In fact, I have not felt that weak in a long time. I was actually considering getting a motorized shopping cart.  I put that statement out there, for my husband to hear, and then didn't say anymore. I snuck glances at him, out of the corner of my eye, as I thought about if I actually wanted "to go there" with the motorized cart and all. The thought of him having to walk slower and possibly embarrassing him decided me against using one.  I didn't want to deal with the looks I would get on top of feeling so sick.  I was determined to push through this and walk around the store like a "normal" person. I was still determined to do so.... when I nearly fainted in the photo isle at Walmart. I then realized that I had made the wrong choice. I must have looked pretty bad because my husband was finding random shelves for me to sit on and shooting slightly panicked looks my way. Fortunately, we made it out of the store without me making a total fool of myself.

Our second and last stop was Lowes. This time I knew better then to even think about whether or not I wanted a motorized cart. I knew we had to make a long walk the whole way to the back of the store. I made a bee line for the carts when we got in the store. Seeing as how this was the first time that I had ever actually been weak enough to need one I had to sit and look silly while I read the directions.  (One of which was to not place a child in the grocery basket located on the front of the cart. Which means that some, not particularly bright, person has tried this before! I chuckled when reading this.) While I was sitting there the lady at the customer service desk was covertly watching me because she had clearly seen me walk in looking completely fine and sit down in the cart.  The questions building up in her mind were clearly written across her face. The biggest one being skepticism. 

For those who have never needed a motorized cart let me just tell you that it was a wholly humbling experience. Because unless you have a very visible sign; like a broken leg, cane, or crutches, then most people in the store look at you and wonder why you are sitting in a motorized cart. More so, I feel, if you are a perfectly healthy looking thirty one year old lady. I saw a frown, as well as a smirk, and a looks of confusion thrown in my direction. I found myself apologizing to everyone that felt like they had to move for me. (On a side note Lowes isles are terrible to have to maneuver through in a motorized cart. They have so many little shelves and little kiosks in all their isles.) I also found myself grumbling, to myself, about the people that felt like they needed to race around me.  Because, as luck would have it, I jumped onto a half charged cart. If I had been in a race I swear a turtle would have won! I was going one mile per hour. My husband ended up pushing the cart to make it go faster.  Which I am sure garnered even more looks for us.


While going through the store I found there were typically two types of people.  The first were very bothered and put out that they had to wait behind me or that they had to go around me. Those were the people who gave me dirty looks over their shoulders as they sped away. (Come on! What does a person need in a hardware store that would require them to run through a store?!) The other type of people went out of their way to make sure that I was able to get through the isles without being hindered by them. One gentlemen moved to the side of the isle for me.  When I started blushing and apologizing for the inconvenience, he told me not to even consider it, then apologized for being in my way. There were, of course, middle of the road reactions as well but there were easier to ignore.

In my experience with Sjogren's I have never really had a time when I needed strangers to make concessions for me, in a public place, while still looking perfectly healthy. I have asked this from friends, but they all knew my reasonings behind my requests.  However, in reality, you can't go through a whole store stopping at every person to explain why exactly you are behind the wheel of a motorized cart when you look perfectly fine.This happens to be a reason why educating people about invisible illness is so very important.  Educating people will, hopefully, stop them from making snap judgements about those who need help because of their disabilities. Especially if they don't look like there is anything wrong. So while it upsets me to be on the bad end of someone's ignorance, it also compels me to continue writing this blog.  Because I am educating people through my experiences.  It may be a small blog with a small audience but all it takes is one person to stumble upon it and be educated, which could make all the difference in someone's life.

Thursday, September 1, 2011

Celebs Can Get It Too....

Wow! Venus Williams has Sjogren's Syndrome.  I am sure everyone has heard that news by now. If not, or if you need a refresher, you can read one of the probable millions of articles about it here.

While I am saddened that she has been diagnosed with this I have to admit that I am also excited by this news.  Having a celebrity "come out" about having a disease will inevitably bring it more notice. So, as the article states on http://health.usnews.com

"The publicity surrounding Williams' announcement is expected to increase awareness of the systemic disease, potentially leading to better diagnostic and treatment options."

It will be interesting to see what becomes of all of this!!