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An eloquent explaination of what it's like to have digestive tract paralysis

Tuesday, April 23, 2013

I've had an idea for a blog rattling around in my head for weeks now, but I haven't been able to thoroughly put into words what I want to say. The topic seems simple, but the response is not. While I continue to work through it, I wanted to share something very important to me, but something many people have absolutely no understanding of.

If you know a little something about me, you know I have multiple severe medical conditions. It sucks. That sums it up, right? It totally sucks. (For those who don't know anything about me, please read my sparkpage.) But while several of my diagnoses are rare, one of the worst is so ridiculously common (1 in 25 people in the US are afflicted) while being so disgustingly misunderstood or flat out unknown by most that it'd be laughable if it wasn't so tragic. After all, isn't it true that one of the most basic human functions is to eat? How can one survive without being able to eat? If someone isn't eating, it must be a mental problem, not a physical problem, right? Most people can't even consider the possibility that something could go so wrong in the body that eating is no longer an option. Just because many people don't know about gastroparesis doesn't make it any less dangerous.

G-PACT is a non-profit organization supporting and fighting for people with digestive tract paralysis. The founder, Carissa Haston, is one of TENS OF MILLIONS of people who are living with DTP, some for many years. Please read this blog/note she wrote to help others have a chance to understand what it is like for us:

www.facebook.com/notes/g-pact-gastro
paresis-patient-association-for-cures-
and-treatments-inc/just-imagine/101515
41970719337


Please note that there is a WIDE range of symptomology and presentations of gastroparesis, so what is true for one person is not true for another. Still, many of us hide what we're truly feeling and dealing with in order to make others more comfortable. (After all, most of society revolves around food so we must learn to accept our misfortune and watch others partake in the joys of being 'normal'.) Because of another's naivety I will often be cautious about how I present myself. It's not fair, but it is what it is.

But so help me, if I have one more person tell me that I'm 'lucky' to look like I do, that I don't understand physical or emotional pain, I don't know what it's like to be misunderstood or bullied, or that I need to suck it up I am going to lose my patience and go on a tirade of epic proportions. I DO NOT DESERVE TO SUFFER EVEN MORE THAN I ALREADY DO BECAUSE OF SOMEONE ELSE'S PREJUDICE OR IGNORANCE!

Thank you for your consideration. (Sorry I yelled; I get incredibly frustrated when it comes to how unknown and misunderstood GP is and the actions/words of some people in relation to this condition.)

  
  Member Comments About This Blog Post:

MISSCUS 5/21/2013 8:20PM

    Even if you are gorgeous, and you are really gorgeous, it sure takes a backseat when you feel bad, and not even be in the presence of mind when you feel really really bad. Looks don't mean a thing when you are ill. Looks are truly deceiving!! I have NEVER had normal digestion. I have ALWAYS suffered pain for hours and hours after eating solid food. But yet I sit there looking normal. Others have no clue.....after nearly a lifetime of dealing with the pain and discomfort, one tends to not say much so as not to make a big deal about it. That makes us also look well when we are not. As a RN, I saw firsthand that most patients who are very ill or even very near death, do not "look" sick.

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RISINGBLUESTAR 4/23/2013 5:58PM

    I really sympathize with you. I don't understand what it's like to have those conditions but I do understand what it is like when doctors don't have a clue or people think you look fine so you must be fine. It's all bull. One thing you are not is lucky. It is NOT lucky to have restrictions with your eating or for something that should be so simple to cause pain. How ignorant for someone to be so dismissive. You don't have emotional pain? How would they know? Not only do medical issues cause emotional pain (so much anxiety and depression but life in general can be stressful anyway.
It's great that you aren't overweight but it's not great that you have to struggle to be at a healthy weight and not underweight. People just see you and don't understand a lot of what you are going through. Sadly, a lot of people don't even try. You can try to explain it over and over but sometimes, it never sinks through.
If you want to get through to someone, sometimes you have to play down to their ignorance. If someone who is overweight tells you you are "so lucky", explain to them that you feel they are lucky because all they have to do is eat less and exercise if they want to be thin. That's not always the case but that would get the point across. They are basically simplifying your very complicated situation so why not simplify what challenges them? It's not a cruel thing to do. It just makes things crystal clear. Overweight doesn't always mean unhealthy and thin doesn't always mean healthy OR lucky either.

The best thing you can honestly do is just put your energy into feeling better and concentrating on the positive and supportive comments.
Sometimes, it's hard to ignore ignorance but by spreading the word and talking about your conditions is a great way to spread awareness and at the end of the day, if that's all you can do, that is still a great accomplishment.

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MOM2ACAT 4/23/2013 5:52PM

    I totally understand the frustration.
Even after I explain my condition to people, there are still people that think that all I have to do is eat yogurt and I'll feel better. I'd like to slap them sometimes! I blame the company that makes Activia yogurt for pushing it as a "cure" for digestive problems.

I get tired of people in general trying to give me advice about my diet. I don't mind feedback from other people with GP, I just don't want or need the opinions from people with normal stomachs that know nothing about our conditions.

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The Vampire Diaries tour blog (finally)

Monday, April 01, 2013


If you understand the significance of that sign, you'll enjoy this blog. Of course, this is the sign from the Mystic Grill in Mystic Falls, VA... aka this is the fake front for the soon to be real Mystic Grill in Covington, GA, where Vampire Diaries is filmed.

My last blog talked about the trip to Covington with SherryGayl in mid March, and now here are the pictures about the tour itself. Of course, shortly after I arrived in Atlanta I found out the cast either had the week off or went to New Orleans to film the backdoor pilot for the new The Originals spinoff. I am incredibly excited for the new show, ridiculously so, but I admit I'm disappointed that I didn't get the chance to meet any of the cast. They only film in Covington maybe 1-2 days a week for the outside shots, while the rest of the filming is done in warehouses in Atlanta, away from the public. Since I had planned for 3 nights in Covington I was really hopeful, but it just wasn't meant to be. Still, being there was great and the tour was awesome.

The tour meets up at the visitor's center which has some items from different tv shows and movies that have filmed in town.


Just a few blocks away is the town square, which includes a lot of filming locations. For such a small area, shooting in different directions allows them to use the same general location many, many times. Around the square is:

The Mystic Grill facade (soon to be a real restaurant) with Sherry and Sheri (the awning was destroyed by weather and just replaced in the last few days):


The alleyway where plenty of vampires have been staked, sometimes with hybrids watching:


The clock tower (town hall), where we're standing is where Klaus drowned Carol Lockwood (they built a fountain for that shot):


Monument:


Alaric's apartment windows (sad face for missing Ric):


Rooftop from multiple scenes, including the 'destroy the moonstone' spell; underneath is a Thai restaurant that Ian frequents when in town:


Grayson Gilbert's doctor's office front:


At the square there's also Scoops, the ice cream and candy shop, and just off the square is Amici, the Italian restaurant we ate at.

After the square, we drove around to some of the houses around the older part of town. Some of these houses were built in the 1800s, others in the early 1900s, so they're pretty old and quite beautiful. There are other locations further out as well:

Flashback Lockwood Mansion, aka the Twelve Oaks Bed & Breakfast:


Rebekah's party house:


Dying Damon's walk through the graveyard:


Isobel's 'best foreclosure in town' house:


Sherry was able to outrun the hybrid that was chasing her:


But the hybrid caught me so I scolded him:


Bonnie's house:


*Next was the Lockwood Mansion, but there are a LOT of pictures from that incredible property so I'll show those last.*

Many street shots were done here (such as Klaus throwing fence posts) because you can see the clock tower in the background:


Caroline's house:


The Gilbert house (which was burnt down in the show because it was foreclosed and is now on the market for over $400,000):



That was the end of the tour! There's more on the tour, but some of the locations are not easily recognizeable from pictures or even while you're standing there. Jessica and Travis (who do the tours) have lots of stories about the different locations and that's part of what makes the tour so incredible to take.

Now, back to the Lockwood Mansion photos. Technically, the house now belongs to Matt since both of Tyler's parents are dead, Tyler is on the run from Klaus, and he left the deed to Matt, but it's the Lockwood mansion in our hearts. Hopefully when Klaus goes to New Orleans Tyler can come back and it'll be a bachelor pad for Matt and Tyler to throw blowout parties at! The house is absolutely incredible. Pictures don't even do it justice because it is so beautiful. The owners come out and say hi while you're there, and they're totally sweet.

The house is surrounded by a huge gate, there's a massive yard with a fountain in front, a carport converted to a 'hangout spot', an insane backyard with a lake, a resident stray cat, and a family of swans.

The front of the house and fountain:


I had to show off my 'It ain't easy being evil' shirt that I wore for the tour:


The incredible backyard (if you look close you can see one of the swans at the front edge of the lake):


The carport 'hang out' area has a covered but open area with a fireplace and chandelier, and their resident stray cat, George:





And it has an indoor area with another fireplace, photos, and memorabilia:




In the backyard there are benches where Elena and Stefan sat:


The staircase where the recent Miss Mystic pagent occured (when April won):


And last, but possibly one of my favorite spots, is the bridge where Klaus and Caroline walked across while talking. This was after they were sitting on the stone bench and Klaus teased Caroline about her Miss Mystic application. Then they walked across the bridge while Tyler vamp-listened in on their conversation while sitting on the steps with Hayley. After they crossed the bridge Klaus talked about the hummingbird and the one time he thought about being human again. I'm a big Joseph Morgan fan and Klaus has become one of my favorite characters, so I did EEP a bit when I realized this was the bridge.



So there you have it! Those are some of the best photos from the Vampire Diaries tour. They definitely don't do it justice. If you're a fan of the show, I highly recommend taking a trip to Covington and taking the tour. I'm seriously hoping to make the trip there again in fall or winter. When (I refuse to say if!) The Originals is picked up, it sounds like they will be filming in Conyers, which is 10 miles from Covington, and Jessica said she hopes to set up a 2nd tour for those sets. Filming for this season of TVD is almost complete (they finish by mid April) and filming for next season should start in mid July, but it'll be way too warm for me then, so I'm hoping to go back and tour both sets in late fall or winter. After all, I missed out on meeting the cast, so I need another chance!

I would LOOOOOVE to have more people join me on my next trip, so if anyone is interested in joining me, let me know and I'll do my best to keep you in the loop when I start planning the next trip so you can try to come with. After splitting the hotel and rental car costs with Sherry, I was able to do this trip for about $650! Thus it's quite affordable and can be quite relaxing as well. It will cost more depending on if you want to stay at Twelve Oaks, want to buy a bunch of merchandise after the tour, eat out more often, or do any extras that are going on in the area (they showed the TVD episode airing on Thurs night at Twelve Oaks and it would've cost $15 to join in, but it would've been too hard on my body).

If anyone has questions about the pictures I posted or the tour, let me know. I hope the TVD fans enjoyed this blog and are considering visiting Covington and taking the tour.

Edit: I realize I forgot to credit SherryGayl for all the wonderful pictures. She brought her great camera along. Very helpful for me, because I could concentrate on maneuvering with my walker and not falling over while she was taking the pictures. When she's in the picture it was Jessica or Travis (who do the tours) taking the picture. BIG THANK YOU TO SHERRY!

  
  Member Comments About This Blog Post:

ANGELFINDER 4/17/2013 5:21PM

  Enjoyed the recap of the tour. Nice when places exist and are not just on some film stage ! Next time tell the cast you are coming and to make sure they are there ! Afterall, they should find time to meet their fans !!! lol

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PRUPLEBEAR 4/11/2013 9:44PM

    Very cool! Looks like you had a great time!

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RISINGBLUESTAR 4/7/2013 4:48PM

    emoticon

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MISSCUS 4/3/2013 1:49PM

    Enjoyed your blog and the pics were very nice. I bet you had a lot of deserved fun!! Good for you!! I would love to go, but funds are limited for me. I do my "travel" mostly online these days. I didn't know the pilot was on Netflix. Gonna have to check it out too.
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SHERRYGAYL 4/2/2013 10:09PM

    Wonderful! Love the recap of our trip! I had an amazing time and loved spending time with you. We definitely need to do it again this fall emoticon I did get on Netflix and watch the pilot episode and, yeah, sorry, still not into the show but the trip and the tour are definitely worthwhile anyway and I'll be excited to do it with you again! emoticon But of course if the Winchester brothers ever do a crossover episode... emoticon

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MOM2ACAT 4/2/2013 4:11PM

    It looks like you had a lot of fun!

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LIVINHEALTHY9 4/1/2013 8:25PM

    So glad you enjoyed yourself.
I know how much you were looking forward to the trip. Great pics.



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SHIRAROCK 4/1/2013 5:52PM

    Wow. That looked so fun! I am glad you were able to go.

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PACOISAWESOME 4/1/2013 3:48PM

    OMG I'm so jealous!! Sucks that you didn't get to meet the cast though :(

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LADYPYE 4/1/2013 1:55PM

    Sounds like you had an enjoyable time. Really good pictures. I have heard of the show but have never seen it. Going to catch it now. Thank you.

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GHOSTFLAMES 4/1/2013 4:26AM

    emoticon emoticon emoticon emoticon emoticon

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My trip to GA - very long! (Excluding Vampire Diaries tour)

Monday, March 25, 2013

I know people have been waiting for this blog, but I've not only been trying to recover from the trip, I've also had to deal with a lot of junk this week. My LTD should have been decided a week ago, but due to their incompetence and blatant disrespect of laws, they never sent the letter requesting an extension to make a decision to my lawyer's office, so while I was in GA they told my lawyer's office they needed information from me on the day they said it was due to them. Morons. My lawyer made sure it was okay for me to get that to them when I was home, so I had to compile a bunch of information from them. I've had to email my doctor, deal with requesting a new housekeeper, yet again asking for someone to pay to fix my broken shower due to the housekeeper, and more. Add in I came home right after an ice storm followed by snow and no one cleaned up my walkway and right after I was home there was another snowstorm and they still didn't clean up my walkway (they left all the ice in place).

As for what happened, this is going to be absolutely crazy long. You've been warned!

Before getting on the plane on Mon, 3/11, I had to finish packing and had to run some errands. This included getting my hair cut (it hadn't been done in many months; it looked awful and was bugging me). I got home and did my inevitable 'I forgot this' 'gotta do this' 'don't forget that' 'oh yeah there's still that' for awhile. A friend waited for me while I finished up then I kissed my kitty goodbye and headed for the airport later than I wanted to be. The good thing about using a wheelchair in the airport is they don't want the staff tied up in long lines, even though there was barely anyone in the lines, so they put you to the front of the line. Unfortunately, I have to go through extra screening. I don't care if they do a pat-down, but it did bother me that all of a sudden bringing medically necessary liquids on the plane means they tear apart every part of your luggage to test all of it, or they opened the sealed liquids and ruin them. Seriously TSA - you're stupid! Thus, it took awhile to tear apart my very carefully packed luggage and then I couldn't put it back together well because they were rushing me. Oh and you can't repack your luggage sitting in a wheelchair but if they do it then stuff is left behind, broken, or they can't figure out how to pack it. Yeah, the next time TSA asks GPACT for suggestions on how to better treat people with medical conditions this will be mentioned. Still, I did my best to keep a smile on my face, crack jokes, and just be cheerful. Nothing gets you stopped faster than being a jerk at security. I get taken to the gate and left there, having to balance my luggage on my walker while I attempt to go to the bathroom and get water. And guess what - there is no such thing as "Minnesota Nice", especially in a car or in an airport. Everyone is out for their own good. Heck, people take over the specialized handicapped seats and don't want to move when they see someone struggling to walk while balancing luggage on a walker. Jerks. I ask at the counter about getting my seat moved so I'll have more room considering I don't walk so well and can't take my walker on the plane. The guy waits until the last minute to give me a seat right at the front of coach, but he said I won the lottery for that seat so I told him I wanted to give him a hug - and he got one. Unfortunately, after that they started boarding - WITHOUT giving me a pre-boarding. So I've got a flight attendant taking my luggage while I slowly walk down the jetway with over a hundred people nipping at my heels and grumbling. OMG You are supposed to let disabled people pre-board for this exact reason! They go by as I try to prepare my walker to be checked under the plane (where it was damaged, TYVM) and then I have to try to get around all of the people jockeying for power in first class and a dozen people already in the way in the front of coach. OMG people, you will get on and off the plane - you don't have to throw fits and elbows to be first on and first off! Finally I get seated. I got seated next to a sweet woman who has a service dog. She was doing her best to keep him from sitting on my feet or getting in the aisle, but he kept wanting to stretch out. It was okay, we made it work. It was good she was so sweet because I didn't figure out until we were landing how to pull out the TV from under the seat to watch the movie that was being shown that I REALLY wanted to see. *Grumble* Thanks flight attendants and Delta for NOT saying a word about it. Not a single person in the front row realized that it was there. So it was 2 1/2 hours of chatting and listening to my mp3 player. And a half hour of trying to get a flight attendant's attention so I could go to the bathroom, considering I needed help to get up and down the aisles. (I peed for nearly a minute straight, that's how bad I had to go.) They ignored my call light and I had to keep turning around to find someone to get their attention.

Okay, so we get there and everyone pushes and shoves off the plane while I wait. And wait. And wait because there is no wheelchair at the gate waiting for me, even though it was requested when I ordered my ticket and by the flight attendants right after we landed. Wonderful. I get off, fight with my damaged walker to get it working, and have a flight attendant carry my luggage up to the gate while I still waited for a wheel chair. Nice. It turns out the airport is pretty empty because of a rainstorm cancelling flights, and they had 1 person to push me and another person in a wheelchair (who apparently took my wheelchair at the gate from what I heard). Poor guy! (BTW when I was in a wheelchair I pushed my walker in front of me.) This goes on for several minutes before we run into a few other staff member who can push a wheelchair. It takes awhile to get out of the airport, but I had her and a few other workers who were leaving after their shifts cracking up laughing. Then out to the shuttle to take me to the hotel. Which the shuttle was totally full so they barely fit me in - after having to ask other passengers to move so I wouldn't have to fight my way through 10 people to get to a seat. Again, the courtesy for a disabled person is severely lacking at airports!

To the hotel, which was cheap, and I got what I paid for. The people were nice but the place was not. It was one of those places that you wear 2 pairs of socks and take one off before getting into bed because the floors are that gross. The walls are too thin, especially being right next to the airport. I dropped off my stuff then took the shuttle just down the road to a restaurant to order a kids menu item and barely be able to eat it all. I talked to a nice police officer as I waited to be picked up to go back to the hotel, and gave him my caringbridge website because he wanted to find out more about me. Tried to sleep at the hotel, but it just didn't go well.

Next morning, Tues 3/12, I checked out, leaving my luggage at the hotel thanks to the wonderful staff being willing to watch it. The shuttle took me back to the airport so I could pick up the rental car, then back to the hotel to grab my stuff. I was supposed to meet SherryGayl around 1:30-2:00 at the airport, but her bus was SERIOUSLY late. Instead, I drove up to where the bus was supposed to arrive in Atlanta so she wouldn't have to hop the train to the airport. Good thing she was running late because I totally couldn't find the bus stop! I drove around for nearly an hour and a half and finally found it. It was paid parking around there and I didn't know how long she'd be, so I drove around more to find a place I could park, out of the way. Then she arrived and I had to figure out how to get the heck back there, with no parking available so I had to pull over, toss her stuff in the car, and get out of the way. GAH! I was so frustrated by then. (Hey Atlanta, you might want to actually have signs and directions about how to get there!)

Finally we were off to Covington! We were using Sherry's phone for GPS (save $40 versus getting it with the car) but when we got into Covington she couldn't get a signal! The insane adventure continues. Finally I just started choosing directions until we were able to get a semi-signal to point us towards the hotel: Hampton Inn. Checked in then went back to the car to head to Wal-Mart for food. The Hampton Inn in Covington has a mini-fridge and small microwave in every room, which is ideal for someone on a very specific medical diet like me. Food support works in any state, so I saved money by doing this as well. Then we spent the evening resting in the hotel room after the long day.

Weds, 3/13 was the tour! I think I'm going to put this in a separate blog, as I'll end up talking about things that most people won't understand unless they watch Vampire Diaries. I'll post the pictures in that blog.

After the tour we headed back to the hotel. I was exhausted and it turns out we got a big of sun burn on our faces, so we got a lot more sun than I anticipated. Sherry went for a walk to grab some food nearby while I rested, then we watched Arrow and Supernatural (both reruns) in the room and chatted. I also showed her some videos and talked about Vampire Diaries, since she'd never seen the show before and I wanted her to have an idea, since we'd be watching a new episode the next night.

Thurs 3/14 we got some breakfast then I ended up getting into a 2 hour conversation with the front desk people. Whoops! I'm a talker! (Obviously.) They were awesome though, one in particular. Finally Sherry convinced me to leave and we went to some of the small shops in the town square. Sherry got this really great dress (perfect for her to go on a date and show off her new shape!). Then we went to Amici Cafe, an Italian restaurant. The spaghetti on the kid's menu was just the right size for me and the waiter was cute and sweet, so it was awesome! Then we went to Scoops for some treats. Sherry finished off her smoothie (I think?) before we even got back to the hotel. I got 1 piece of chocolate covered toffee which I ate slowly while laying on the bed in the hotel. Sherry went back out a little later to walk to Walmart and see if they had any sweaters. She got back just in time to watch Vampire Diaries with me... laughing at my utter enjoyment of the show and of the fun on twitter during the show. Yes, I get pretty funny during my favorite shows!

On Fri 3/15, it was time for the fun to start wrapping up. We ended up talking to the sweet, adorkable front desk clerk again for an hour or so before heading up to the room to pack and check out. It didn't take long to get back to Atlanta and I dropped off Sherry at the bus stop. Then back to the hotel right next to the airport to check in and drop off my luggage before dropping off the car at the airport and taking the shuttle back. I still had food left so I ate that for lunch and dinner (I had a handicapped room right next to the breakfast room so I could use their microwave and ate the cold stuff first). Unfortunately, they had begun a remodel project, so the whole afternoon and evening they were working on the walls with crazy noisy equipment and both dry and wet paint was everywhere. What a mess! Then most of the night people upstairs were either attempting to break the bed or break each other because every few minutes there were echoing thuds... this lasted for several hours. I eventually had to ask the front desk to check on them because there had to have been damage up there!

I ended up getting maybe an hour of sleep before I had to be awake at 4:45 am on Sat 3/16 to pack up the last few items, check out, and catch the shuttle to the airport. Unfortunately, the shuttle was running late, which meant I was running late, but the Atlanta airport was much better about my stuff and didn't unpack everything. The boarding process on the plane was also much better, as I got to pre-board and be settled before everyone else shoved through. I had a nice guy next to me who was on the way back from overseas (India I think?) and still had to catch another flight from MN to the west coast. The disembarking was also better and my friend was ready and waiting to pick me up. I got back home and was absolutely exhausted.

There's no rest for the weary, of course, as I slowly unpacked I put just a few things away then rested for awhile until everything was done hours later. I laid down for a short nap and soon after there was a knock on the door. A police officer came by. Apparently the city is sick of having to send officers by to tell my neighbor to turn down the volume, and some of them blame me. They're setting up mediation for later this week, which is going to be 'fun'. Ugh!

Anyways, that was the trip! I figure I spent over 35 hours to plan this trip, excluding planning what to pack and actually packing. Every bit of the travel was planned and prepared for (except getting lost in Atlanta of course - I thought I had that figured out but it didn't work). The hotels were carefully planned for their amenities and cost, and I called both to verify everything before I booked. I spent so much time planning it that while it was happening I often questioned if it was really happening or if I was dreaming it because of how much time I had thought about it.

I'm so glad I went. I really needed it. I also really, really hope to go back, potentially in the fall or winter. There are a lot of things that will need to go right to make that happen, but I'm trying to be hopeful. With some luck, it will happen - especially because there's more I want to experience there. It would also be absolutely incredible if the next time I go more people can join and make it an even bigger event. How awesome would that be?

If you've read all of this, you're a superhero! Thanks! This has taken hours for me to type and I have to get up early tomorrow, so I'm going to do the Vampire Diaries set tour blog tomorrow (hopefully). That blog will include some pictures. I can't include all because Sherry is awesome and took a TON of pictures. Anyone who's into the show should check out that blog and seriously consider visiting Covington and taking the tour. It's so much fun.

  
  Member Comments About This Blog Post:

PRUPLEBEAR 4/11/2013 9:41PM

    emoticon Glad you got to go!

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MISSCUS 4/3/2013 2:05PM

    Thoughtful people are good to find. Sometimes hard to find. But you seemed to find many. So glad you were able to take the trip. I have also had the pleasure of the people running and pushing/shoving to get on or off the plane. So rude. Like a bunch of stampeding cattle. But glad for you it all turned out well. I also enjoyed the other blog with all the TVD pictures. I like blogs with pics!! Say thank you to Sherryvale too.

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SHERRYGAYL 4/2/2013 10:24PM

    It's true. She's a total geek watching this show! I loved it! Plus I love how she makes conversation so easy for me emoticon because it's not something at which I excel. But 1state is an amazing person, Covington is a beautiful town, Amici's makes an incredible cheesesteak sandwich, and the front desk clerk really was totally adorkable emoticon I'm very excited about our return trip this fall! emoticon

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IUHRYTR 3/25/2013 8:25PM

    In spite of the problems it sounds like you had a fun time. And next time you'll know where the TV is. I haven't flown since Jan. 2003 so I probably wouldn't have expected a personal television. Hope you get rested. -- Lou

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LIVINHEALTHY9 3/25/2013 7:33PM

    Glad you had a good trip minus the rude people and mix ups.
I know you have been looking forward to it for a while.

I don't watch the Vampire Diaries but will read your tour blog when you post it.


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MOM2ACAT 3/25/2013 4:28PM

    I'm glad you had an enjoyable time once you got there, but sorry that you had to deal with so many rude jerks on the way!

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SHIRAROCK 3/25/2013 9:28AM

    Cool. I am glad you had fun!!!

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RISINGBLUESTAR 3/25/2013 8:50AM

    I am glad you enjoyed going even though some of the events were stressful. It's nice that you were able to do something you wanted to do.

I don't understand why people were so impatient when you were boarding the plane. Instead of whining & moaning, they should keep things in perspective & not take their health for granted.

It's good that through all the stress, there were positives. I look forward to reading the Vampire Diaries blog. I am familiar with the show even though I haven't been keeping up with it much. It is funny how our favorite shows can bring out sides of us people never knew we had though. emoticon






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My trip to GA next week, March 11th - 16th

Wednesday, March 06, 2013

I've mentioned a few times how much I've wanted to take a trip to GA as something positive I really want to happen. I've waivered on it a few times, debating over whether I should or shouldn't go, but with all the negatives happening and about to crash in on my life in the next few months, I decided I needed to do it. It'll be a last real positive before a bunch of horrible negatives happen. Well, I've been planning it like crazy, but now everything is booked and I'll be in GA NEXT WEEK!

For those who wanna know, here's what's happening:
Mon, 11th: flying into Atlanta late evening & staying in cheap hotel near airport
Tue, 12th: picking up sparkfriend SherryGayl at airport & driving to Covington, GA (about 45 mins to the east)
Wed, 13th: touring Vampire Diaries set with www.mysticfallstours.com/ and hopeful I'll have a chance to see some cast members (6th-7th is supposed to start filming of the huge episode that will become the backdoor pilot for The Originals spinoff, and with a typical episode taking 8 weekdays to film, they should be finishing up the episode while I'm there!)
Thu, 14th: no plans so far on this day except resting and watching a new TVD episode in the evening
Fri, 15th: leave Covington, drop off SherryGayl for her trip back home, go back to cheap hotel for a few hours of rest/sleep
Sat, 16th: very early morning flight (depart at 7:30 am!) back home

Anyone who's seen my posts/blogs/etc knows that this is going to be crazy difficult on me. I'm using a walker (at 31 it really sucks), get tired easy, and I'm used to spending a lot of time laying down and resting because of my medical conditions. It's going to be hard, but if I can't push myself to do this, is there anything I would push myself to do? I'm also totally broke and am putting all of this on credit cards (and doing this trip as cheaply as possible), but I've spent my whole life being financially responsible; I'm already facing being homeless and without aid/help/services, so if it's going to happen then I'm gunna be homeless and in debt for something worthwhile! I didn't choose to have to face this many medical issues, I'm losing the battle for aid and services partially because of political battles that are ridiculous, and I'm so sick of taking crap from the world because fate chose to deal me this hand, so I'm going to take a leap of faith and do something good for myself - that's what this trip is about.

If any of my sparkfriends who live in Georgia would like to meet up, let me know! The best days would be evening of the 12th or during the day on the 14th in Covington, if you're a fan of The Vampire Diaries and want to come on the tour on the 13th that would be INCREDIBLE, or if nothing else there's the evening of the 15th in Atlanta (but I'll have already returned the rental car, so no driving around for me). Sherry will be with me and she's awesome so I'm sure we'd all get along.

Sparkfriends, keep your fingers crossed that this tour will go well for me. I've got this planned out pretty darn well, so I'm hoping it'll go smoothly even with my medical issues. (For instance, the hotel in Covington has a mini fridge and microwave so I'll be going to a grocery store to pick up some foods I can eat to try to avoid some Gastroparesis problems by NOT eating in restaurants.) So WISH ME LUCK! Eep!

  
  Member Comments About This Blog Post:

OBIESMOM2 3/15/2013 11:49AM

    you had good weather while you were here. Some of The Vampire Diaries stuff is on my exercise route.

hope you had fun & that you get home safe & sound

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SPASTASTIC 3/15/2013 2:23AM

    I hope you're having a great time! You'll have to tell us all about the Vampire Diaries set tour! I love that show and wish I could've gone too!

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MOM2ACAT 3/8/2013 3:52PM

    Wishing you all the best, you deserve to have a great time!

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MISSCUS 3/6/2013 10:56PM

    Sheri, thank you for your wise comments today on my blogs!! I appreciate the feedback. You made me feel validated and your comments added to my feelings of motivation. I liked the added info on muscles, etc.
Your blog: I am so pleased for you for going ahead with your plans for TVD excursion. I know you will enjoy it. Kudos, and good move getting your foods from grocery rather than eating in restaurants. Many people feel kind of sick after they eat restaurant food. I do too. It takes my stomach 3 to 4 hours to empty, and if I eat bad food, or fast food, I am in trouble. I am sure the trip will make you somewhat exhausted at times, your enjoyment hopefully will help you gather the energy, and that you feel okay and able to enjoy every last moment.
The financial part, we already know that is hard. But, as you said in your blog, at least it will be fun and so worthwhile. I am happy for you that you decided to go ahead and go. YAY!
I'm still working on the Ellen thing, adding to it every day or two. Maybe they will finally take notice. I have been pasting appropriate bits of your blogs, along with links to them. I pray for you every night. I hope you don't mind that I used a few bits from your blogs. As you know I am retired, and I don't mind spending some of my day's time in an effort to help you get help. I truly wish there was more I could do.
Enjoy that trip, sounds like so much fun for you! I wish I too could meet up with you to go too. I love TVD and, Supernatural which is now my phone screensaver!!

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SHERRYGAYL 3/6/2013 10:46PM

    I have bought my bus ticket and reserved my spot on the tour! emoticon

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LIVINHEALTHY9 3/6/2013 9:32PM

    Have a great trip, Sheri.
I know you will have fun.



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DRAGONCHILDE 3/6/2013 9:15PM

    I would love to try and get together with you; I can't make any promises (my schedule is complicated) but a visit to see my grandparents would not be amiss. :)

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My life could be a soap opera - but no one would believe it could happen.

Thursday, February 07, 2013

For those who have an idea of what I've been battling, and how incredibly difficult my life has been lately, what do you think could happen next? How about this:

My neurologist is giving up trying to stop the status migranosis. She refuses to do the standard treatment that has been used for decades because she doesn't believe in it. The treatments she has tried (4) have all failed or made the headaches or another one of my conditions worse. She has also failed to find why I keep losing blood flow and nerve signals to my extremities for no good reason and why my muscles keep giving out. She's ignored the orthostatic intolerance (blacking out frequently when I change body position) also. I think I make her feel stupid and/or she thinks I'm completely faking it because I'm not statistically normal. Of course, the neurologists in Milwaukee aren't willing to do much of anything themselves because they expect the local neurologist to do it since I can see her without having to fly across WI for an appointment.

I can no longer afford to see my GI doctor in Philadelphia and the GI doctors in Milwaukee are refusing to even consider taking on my gastroparesis (paralyzed digestive system). They do want to look further into my eosinophilic esophagitis (allergic reaction preventing the esophagus from working) but refused to give me an appointment for the testing because the doctor didn't turn in the orders. Then she all but demanded I show up there immediately for testing, no matter how risky and horrible of a trip it would be for me. When I said I would not risk my life for testing that she didn't deem that important a few weeks ago, she got huffy. When I tried to set up the appointment for late March or early April (when winter will be wrapping up and the flight on a 4-5 seat plane won't be as dangerous for my other conditions) they refused to give me an appointment because they 'don't schedule this test out that far'. Doesn't matter that I'm traveling 350+ miles, have to set up the trip with the non-profit that flies me, with family, and schedule it around other doctor appointments - I'm supposed to bend to their every whim even when they've had an epic fail.

My primary care doctor is playing games with me again. I have several mental health issues (when you have as much medically wrong as I do, and you can never again be the person you once were, let alone be who you want to be, because of your diagnoses, of course you'll be depressed and anxious!) and she's trying to claim that those are my ENTIRE problem because they can't fix the physical issues and/or she doesn't actually understand what several of my diagnoses are. Seriously, she admits she's never heard of some of them and never knew that some of the others could ever be as bad as I have them. She's trying to convince me to give up finding the other diagnoses that I was told by other specialists MUST be there. Having such a wide range of diagnoses is so unique that there must be something that's missing to tie it together. I've been told to keep looking and keep seeing specialists. She sounds like she wants me to stop and I actually have to delve into medical terminology to speak with her on something closer to a doctor's level to make it clear that I AM NOT FAKING THIS! I'm not giving up on her though, because I know she's been trying to help me; she's just so far out of her comfort zone that she can't process what's happening.

I also need to get an appointment with a vascular specialist and perhaps a cardiologist. My primary doctor all but said most vascular surgeons are jerks, so it's doubtful they'll want to deal with a unique case such as mine. Which means if I do get an appointment, I will probably spend most of the time fighting for them to just listen to me.

I have been without any income since April 2012 - after my short term disability ran out. The long term disability company denied me benefits by claiming pre-existing conditions (which is crap) and by sending my denial 3 days after I faxed (and followed with a phone call to ensure the fax was received) proof of 5 new diagnoses that have absolutely no chance of being pre-existing and can't be anything but disabling... which they promptly 'lost'. I had hoped to send in an appeal but I am not currently capable of doing it myself, so it took months to find a lawyer, then a month and a half to convince any of my doctors to help with the appeal (my primary is the only doctor who would submit anything - the rest have a mistaken belief that their notes can take the place of legal documents). In mid December the appeal was submitted and I was supposed to be approved or denied by February 1st. They didn't. They decided to delay the case for another 45 days; when I called to ask about what was happening they were snarky and told me I never gave them any paperwork about the new diagnoses - which is the paperwork I submitted 3 days before their denial. I am down to $500 to my name (waiting for nearly $1,000 in reimbursements from the state to cover my COBRA costs) and if the estimate I was given for how much I should be getting from LTD is correct, they owe me enough to pay up the $4,000 I'm behind in my mortgage, $10, 000 I owe my parents, and several thousand I've racked up in credit card bills (I never carried a balance until November 2012 - I've had my main CC since 1999).

Of course, the social security disability is in limbo, and will probably be delayed for another year or more until I can get in front of a judge.

Speaking of my mortgage, I got a letter today saying I'm going into foreclosure. My social worker said that the county should be able to help me with my mortgage since there is NOWHERE to put me and if I lose my house I'm homeless. She said that I have to be pretty much out of money and that being a few months behind should help my case. Apparently they waited so long to even consider it that now they've determined it's not worth catching up my mortgage and helping me - even though there are no open waiting lists for section 8 housing, they will not put me into a nursing home or assisted living facility, and any other place they could put me into will put me on a waiting list for a year or two if I'm lucky. So unless I get a few thousand dollars and some income soon, I will have no where to live. And anyone thinking I should move in with family, my sister and I barely speak, my parents have serious mental health problems (and my mother has been physically abusive on top of that for a large portion of my life), I don't get along well with pretty much any of my relatives, and most of them live in areas that lack adequate medical care, especially considering the demanding nature of my conditions and the obscene number of doctor appointments I have each month. I also have no friends I can move in with as most of them have thrown me away because I'm 'too sick'.

Today I also got a letter that there is now a lien placed on my house due to a nearly $1100 unpaid bill for the deck the association replaced this past summer. The postwoman said everyone in the neighborhood got the letters, so it looks like the HOA decided to not pay the contractor. Yes, they fail at paying bills and fail at making sure that driveways and sidewalks are clear so people like me can actually leave their house without risking life and limb - nothing like trying to use a walker in 3+" of snow on top of 1/2" of solid ice. They also fail at enforcing the dozens of rules in the association - even when I complain over and over and over and over so they could've probably paid for all the decks with the fines they could've assessed!

BTW, imagine this: even though I've been shelling out nearly $500 a month for COBRA, somehow my insurance was cancelled on Jan 1st with no one able to figure out how it happened, why it happened, and who/what did it. So now I'm getting phone calls from doctor's offices saying I have no valid insurance. So while the health insurance company is trying to figure out why it was cancelled, I asked that they at least reestablish it! Way to screw over a person who has a lot of medical issues and way too many doctor appointments.

As I said I have $500 to my name. If the LTD had come through I really, desperately wanted to take a trip to Covington, GA, by mid March. I'm a big Vampire Diaries fan and at least one of my favorite regular characters is leaving to go to a spinoff so if I'm going to have a chance to meet the actor (in addition to the tour of the town and filming locations) I have to go by mid March (absolutely no later than the very beginning of April). There spinoff is set in New Orleans, so they probably won't be filming in the same area. I have had a ridiculous number of things taken from me because of these diagnoses, including the only 2 real goals I've ever had for my life: to be a good wife and mom, and I just wanted this one chance at something really positive in my life, but apparently that was too much to hope for. Even if the LTD pays out, it'll be too late for this trip to have a chance of being what I want it to be.

Can someone tell me how someone with as many medical diagnoses as I have, and having to face it alone (Please, no offense - I mean in person support. Understand I do appreciate the words and support of my online friends) when even being alone is becoming unsafe, is supposed to deal with all of this? I know exactly why my mental health is continuing to worsen and why I just want to spend my time sleeping, watching tv, and wasting time online so I can distract myself from spending every single moment of every day bathed in negativity and horrible-ness.

My social worker is supposed to be coming tomorrow and she's *supposed to* be bringing someone with who will be hired by the county to do household chores for me, since I'm unable to. (Imagine trying to scrub a toilet or tub when just standing up, let alone bending over, can cause you to pass out and strong smells can make you severely sick.) I'm not holding my breath.

I know I've asked for this before, but things are worse now than ever... If anyone is willing to write to the Ellen DeGeneres Show or to anyone else who might be able to help me try to get through this time, I would appreciate it. I'm willing to take whatever help I can get, though I know I may not deserve it. I'm desperate to find SOME positive that I can cling to because I feel broken, destroyed, and forgotten. I'm terrified of what's going to happen in a few months when I lose my home and have nowhere to go... especially because there's a chance I'll have to give up my cat and he's the best family I've got.

  
  Member Comments About This Blog Post:

MISSCUS 2/25/2013 5:18PM

    Sheri,
I AM SORRY, I always get to your blogs late. I will recontact Ellen with your story. In the meantime, you are still in my prayers. You are so young to have to go through so much. I have empathy for you. It is tough enough to have ONE diagnosis, much less the many you have. I agree with you, who wouldn't have mental issues when having to deal with what you've been dealt in life. It is hard to have to go through the grief and loss issues with all the broken dreams you may have. You have been so strong for so long. I just hope and pray for you that things will start to look up, that you will have more answers, and a MD who can help you. Huggs, Phyllis

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OKIE30 2/20/2013 12:52AM

    God bless you!

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JAMER123 2/13/2013 12:07AM

    I too, am so sorry you are not able to get the help you need!! It amazing me that when there is a program available to give aid, it isn't given to the most needy for what ever reason. I think the suggestion of contacting the United Way is a wonderful one! Here is a URL to help you begin your search!! Good luck. I will be keeping you in my thoughts & prayers.

https://www.unitedw
aytwincities.org/our_impact/hea
lth/

You will have to do a copy and paste as there isn't a "add a link" tab here.

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EVWINGS 2/12/2013 11:27PM

    I'm sorry you are still having such problems. I'll be keeping you in thought and prayer. This can't be easy to accept and someone somewhere deserves a kick in the hind side. Hang in and try to be as positive as if possible for you. I'm here if you need me.

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JOYCECAIN 2/12/2013 10:35PM

    It is hard to believe that you have to go thru all of this. I am sorry that I can't help you. If I had my own place I would have taken your kitty.

I have a friend in Scotland, they do not go thru any of this crap for doctors or medical supplies. I wish you love.

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DRAGONCHILDE 2/8/2013 9:29AM

    I understand what you're going through, more than you realize. It is SO hard! My husband has a lot of difficult to treat, interlocking unique diagnoses and it's nearly impossible to get someone to look at the WHOLE system when treating. Each one looks at their little specialty, and doesn't take into account anything else. The neuro ignores the gastro symptoms, the gp ignores it all and writes you another prescription, the mental health people figure they can keep you drugged into submission.

I's tough, hun. I feel for you, and I know how tough it can be. We are simply uninsured, so we have no resources beyond a few county programs.

The only thing I can suggest is to call 211. United Way has tons of resources, and they m ay be able to help you.

Either way... I'll be praying for you. Because that's damn tough row to hoe, and I know it all too well.

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SHERRYGAYL 2/7/2013 11:07PM

    I don't know why life has to suck so badly. Some of the worst things I've ever experienced involved doctors refusing to listen to me or to take me seriously. I sincerely hope this is the year you find that doctor that gives you that validation you need and deserve. Even if there is no cure, that validation is amazing. The tear in my arm can not be repaired but since the moment it happened I've described it as "something tore". One of the best days of my life was when I finally got an MRI and the diagnosis used the word "tear".

You are a wonderful person and if you ever do come to Georgia I'm going to give you a real hug!

emoticon emoticon

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KELZIEROSE 2/7/2013 4:37PM

    Cripes, that really is too much to go through :(

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MOM2ACAT 2/7/2013 4:30PM

    emoticon I wish I knew of something or somebody that could help. I'm so sorry you have to go through this; I hope one of those people, whether it be your social worker or a doctor will step up to the plate and do something to help.

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-AIRYN- 2/7/2013 11:58AM

    emoticon

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SPASTASTIC 2/7/2013 3:26AM

    You're a wonderful and kindhearted person and I am so sorry you're going through so much. I wish I could make everything better for you. emoticon You're in my thoughts and prayers, hun,

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PRAIRIECROCUS 2/7/2013 1:55AM

    emoticon emoticon

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