Another appointment

Hello Dreamers!

Happy Tuesday! I hope this post finds you well.

So, last Friday was another appointment with the VA, this time it was with a Physicians Assistant in the Claims office to see if my back needed to be added to my disability claim or not.

Last June (2015), I tried to have my back added to my disability claim once I was told that I have Thoracic Degenerative Disk Disease, but later on during the process, it was never added to my claim. I have degeneration of T5/T6 (this is the most noticeable area), T7/T8, and T9/T10 according to the MRI that I had done on my back last year. 

The gentleman that I met with for my claim was pretty cool. He was an Army veteran, had spent several years as a Medic before he got out and started working with the VA. He kind of reminded me of a biker or something with his long silver hair tied back in a ponytail and a longish handlebar type mustache (not sure if that is the best way to describe his mustache but that is what I am going with).

As he was reviewing my claim he was highly incensed to realize that my Thoracic DDD was no where to be found on my ratings. They didn't agree with it, they didn't deny it, nothing... they just swept it under the rug. According to him, this is against regulations within the VA. There was even a proposed rating listed in my initial proposal before the claim just disappeared all together! I'm not even surprised that this happened, so I'm not even mad. I just asked him so what do we do from here?

He also said that my GERD (gastroesophogeal reflux disease) wasn't properly diagnosed or rated, so we needed to have a discussion about that. While it was listed as a service connected disability stemming from my deployment, they didn't give me a rating on it. He spent most of the appointment (which took about 3 hours) asking me questions and looking through digitized copy of my medical records from the Army. I had mixed feelings about the appointment as a whole. I wasn't sure if this appointment was going to work out in my favor or if he was going to be like some of the other doctors I'd met at that particular VA and not want to help me because he thinks I am faking it.

Turns out he was actually there to help me! He said that since there is documented proof that I have degeneration in my back, then he is advocating to get it placed on my disability claim simply because it exists. He said that it should've never been taken off in the first place, no matter what stage of my MEB I was in when it was diagnosed because up until the day I was discharged, I was still on active duty. The other good news was he was working on my GERD as well. He asked me some questions after reading the notes and determined that they didn't properly diagnose my GERD, while I have it, it's more severe then they listed in the diagnosis and on my disability claim. 

It was refreshing to have someone in my favor, not just at this particular facility, but with my claim in general. The problem with the VA is that the doctors are overbooked, so you only get one scheduled appointment with them a year unless they tell you that you need to come back. I need to go get some labs done, I just hate blood draws, so I keep pushing that one off (bad Jenn... I know better). I need to start scheduling more appointments with the doctors there because I am not getting better and the medication that they prescribe me isn't helping. I've been using the excuse of a busy schedule (which is partially true) but I just need to get off my bum actually schedule some appointments. It doesn't help that the last time I tried to schedule an appointment with mental health they didn't have an availability for the next two months (good thing I am not one of those vets that are suicidal and need more attention than I do....)

I guess the moral of this story, my fellow spoonies, is to just keep at it with your doctors. Make sure they know that you aren't going away until you get the help you need, no matter what. Don't take a mediocre answer as the last one, there are always people out there that are more willing to help you, you just might need to find them! There is hope out there, and I understand how frustrating this life can be... but there is hope of help!

Life Lately

Hey Dreamers!

I hope all is well with you all.

I know that I have been absent from here for a couple of weeks - maybe a little less time then I think it's been.... things have been crazy around here. Well... maybe not as much as I think it is... but you know how your mind occasionally warps things to make them feel worse then they really are.

I finally had my first appointment with the VA at the end of March. Me, being who I am, made a list ahead of time of things that I wanted to talk about with the doctor. I also made a list of all my medications, because being a spoonie, there are quite a few and I am liable to forget something if I don't write it down. My nurse and doctor were really impressed. It really pays to be organized. The first appointment went alright, lots of talking and introductions. My doctor is pretty cool, she's an interesting woman. Very quickly she determined that I needed to schedule appointments with the behavioral health counselor, get screened for a TBI (4 years too late), a new optometry appointment, a radiology scan, an x-ray or MRI of my abdomen, some more blood tests.... there were just quite a few things that needed to be done.

This is my daily page inside my bullet journal covering everything that I needed to discuss

Since then I have picked up refills of ALL of my prescriptions (thank god) and had my initial intake with a behavioral health counselor. That word has such a negative connotation.... behavioral health.... especially within the military community. I know that I need to talk to someone.... my anxiety already determined that back in 2014.... and at the beginning of the month I was also diagnosed with depression. I'm supposed to start a group therapy session weekly in May. I don't know how I feel about this new diagnosis.... it makes sense I guess.... but another thing wrong with me? So there is that...... I'm now awaiting yet another medication that I am supposed to take to arrive in the mail, the lady had to talk to my doctor to make sure whatever medication she prescribed to me wouldn't interfere with anything I take for my fibromyalgia.

I have also submitted my paperwork for my handicap placard, now I am just waiting for that to be approved. Speaking of that... my car is finally registered here in the state of NC. It was still under my German registration because there was some stuff that I needed to get done to my car before getting registered. However, things changed when I was pulled over by a police officer on my way to work because he didn't recognize my NATO license plate. Thankfully, I didn't get a ticket.... but it was still a pain in my rear end. 

Yesterday I applied for my NC state drivers license. I figured that it was about time, since I plan on living here for quite a while, and I'm considering changing jobs and working for the county I live in and it's mandatory to have a NC state license. 

I got to meet Lee's bandmates last weekend, which was a total blast. They are nerds like me in their own way, and just super friendly people. I look forward to getting to know them more. They live about an hour away from us, so after I got out of work on Saturday, we drove there with the intent for them to practice, and then we were going to grill steaks and just hang out. They got to practice for a while before Lee got word that he had 24 hour duty on Sunday, so we had to return earlier then anticipated. So on Sunday, I hung out with him while he was on duty, and then picked him up from work on Monday morning and drove him home. Our plans for this coming weekend got screwed up because last minute he had to go out to the field until Sunday, which just kind of added to my feelings of these past two weeks. Gotta love the dumb stuff in the Army. I've come to accept that it happens, sometimes even expect it (like what happened to this weekend), but it doesn't mean that I have to like it. 5.5 years in the Army taught me that. 

shenanigans with his bandmates hat's

Today, I was supposed to enroll in classes that start in early June. I found out that my college accepted all 24 of my transfer credits from my time in the Army, which is a relief. I am scheduled to graduate 19 December 2019 with a Bachelors in Business Administration with a focus in marketing. I can't wait to start school again, the best part is that I get to take classes on base since I am a retiree. This means smaller class sizes, which will help with my anxiety, and it's also in an area that I am familiar with, and amongst other service members. I don't know if I could handle a regular college class size or the way that people look at me. I have to contact my new advisor tomorrow to get some alternate pin number needed to finally register for classes.

I also adjusted my availability hours for work. I went from open availability (minus Monday mornings to take Mem to school) to a more structured availability. Amy is picking up more hours at work, which means I need to make sure I am home more so Mem isn't by himself more often then not. For instance, Amy took a Crisis shift at the hospital tonight (which means she gets like twice the pay because they are understaffed and it's last minute) so it's a good thing I am home to hang out with Mem. He's self sufficient enough if we have to leave him by himself, but we decided to limit how much time that is if at all possible. 

That and honestly, work is stressing me out and burning me out. ATC was stressful, with a high burnout rate, but this is stressful in it's own way. My anxiety isn't really cut out for a high paced customer service type job while spending most of the day on my feet combating my fibromyalgia. It's definitely taking it's toll on me. Don't get me wrong, I really like my job.... but it's burning me out. I've made some awesome friends in certain coworkers, and they're probably the only reason I haven't quit. I've gotten in my groove, so most of my day is kind of spent in a mindless routine that I don't have to think much about. That, and I was really hoping for some kind of administration job when I got out, which I obviously didn't get and I'm not complaining because at least I have a job. I just need something that pays a little bit better and doesn't wear me out as much on a daily basis. 

I've been working on my bullet journals. Yes, that's plural... because I've separated my every day bullet journal, my medical journal, and my blog journal. My every day carry is still housed within my MyDorian TN - it houses my monthly/weekly/daily insert, my scrap journal, a newly added Spring Semester insert for school stuff, and my 2016 yearly book. The other two are in separate, bigger Moleskine notebooks. There will be a walkthrough video and coordinating blog posts coming within the future month for those that are interested.

I think that is enough rambles for now....

don't want to bore you guys with too much of my life.

What have you all been up too lately?

Disney Trip 2015 Part 1

Hello dearest friends! 

Today I wanted to share a three post story with you about my trip to Disney World earlier this week!

Note: Most pictures were taken are property of J.L. McClure Photography, which is my photography business. If they aren't my pictures, then it's noted below the photo.

So I rented a car on Tuesday morning (because mine is still not here) and spent the day driving down to my parents house in Florida! It's a 10 hour drive for anyone who is curious. It was a long day. I left around 0830 and made it home just after 1830 (6:30 pm), just in time for dinner. Once I got closer to home on US 19 I hit the rush hour traffic, which made my trip longer then expected. My brother was awesome once I got home and made some quesadilla's for dinner! 

I met the newest addition to the family: Finley. A month or so ago our Golden Retriever passed away, and our small dog Fergus was lonely. He and Lady had been friends since I deployed in 2011, and they were inseperable, despite the massive size difference. Apparently he was pretty lost, so my parents decided to rescue another smaller dog from the pound, and that's how they got Finley. He's an interesting little dog, a little spastic sometimes. It's taking a little time to get used to because we had Lady since I was in middle school, but he's alright (as long as you don't leave him with electronics or paper towels)

This photo was taken by my father and isn't my property.

There was a main purpose for this trip though, and that was for Lindsay and I to make a single day trip to Walt Disney World for the Candlelight Processional on Wednesday. When we were in high school, we used to have to participate in the Processional, so we wanted to see it from the audience point of view. It was a blast!

This is us from 2011 before I deployed to Afghanistan taken by a dear friend of ours, Silent G Photography.

We left a little bit later then we originally planned, but that is because we had to run by Joann's to get my mom her own Canon Selphy printer and then Starbucks for a Butterbeer Frappacino (Lindsay never had one.... yet another convert)

The first thing we did when we got to Walt Disney World was go in search of their military resort, Shades of Green. It caters solely to the Military and their families! We parked in their parking garage and then went inside to purchase tickets. The cool thing was that we got a 1 Day park hopper pass for much cheaper with my military discount. It was well worth it since originally we were only going to Epcot. It was also right across the street from the Polynesian Resort, where we caught the Monorail to Magic Kingdom to start our adventure.

The first thing that you see once you get off the monorail and get into the park is this gigantic tree right in the heart of Main Street USA. It's a gorgeous tree and I can't imagine how long it took them to set up and decorate. I also love how they have an American Flag flying right there as well.

The memory keeper in me warned Lindsay that we would be taking a LOT of pictures. When we entered the park, there were tons of photographers who worked for Disney that were more then willing to take some pictures for me with my own camera. Had to do the obligatory picture with the castle in the background. Poor Lindsay was being blinded, so it was a good thing that she was wearing sun glasses so she could close her eyes during the pictures. 

This is a better view of the castle as we got closer to it with less people standing in front of it. The photographer in me really needs to learn how to clone people out of pictures!

The first thing that we did was stop on Main Street for some food. We found the Baseball themed restaurant and picked up a hotdog and fries for me and some mini corn dogs for Lindsay. There were no seats so her and I propped up against a small rail fence in front of this piano. While we were eating this gentleman came out and started to play the piano. I just loved the smile I got in this picture of him playing! The reflection was perfect!

Once we ate, we decided the first thing we wanted to see was the new Beauty and the Beast castle that was built in Fantasy Land. It took us a few minutes to get there, but that's ok. This place is AWESOME!!! So what I didn't know was that they made this into a new restaurant. We didn't go inside (obviously, but we did see it from the outside)

This was another gorgeous structure that is newer to the park. So I am really not sure what story this building comes from. It might be from The first Little Mermaid movie, but I am not sure and I am not sure where my map went (yes, I kept them for my December Daily album).

From there she and I talked about how I wanted to get pictures with the characters if possible and she mentioned that Gaston liked to hang out around his Tavern, so we walked that way. I love this little statue that sits in front of the Tavern! We found Gaston but were told he was leaving and would be back at 1530, so we headed on our way to the Little Mermaid ride to kill some time.

Do you recognize these? If you've watched Tangled, they are from the city once Repunzel and Flynn get there to see the floating lanterns. I love the colors and how they popped! Gorgeous area!!!!

From there we went to The Little Mermaid ride! This was done to kill time before we went back to see Gaston. It was nice and cool in the ride and it was fun to sing along with the songs. We're both huge Disney nerds, so of course we knew all the words!

We went back and got in line to see Gaston. This guy played the character PERFECTLY and I was laughing the whole time. I got his signature and then we headed on our way.

We finished up in Tomorrow Land, looking for some Star Wars related things for Lindsay's boyfriend before moving on to the second part of our adventure! We found some awesome merchandise (which I think will be a separate post at another time) and happily made our way back to the monorail.

Of course, it's no normal "adventure" for me without my fibromyalgia kicking me in the face. Since I wasn't driving my Escape and was being rushed the morning I drove to Florida, my cane was left at the apartment in North Carolina (believe me I was kicking myself in the pants for that one). The second problem I had was since the movers took my running shoes all I had to wear were my cowboy boots and some flats. I decided the flats were going to be better for me, but they still caused me all sorts of problems. Walking was a nightmare for me, however if you live with a chronic pain disorder, you learn to just live with it and not let it stop you if possible. I dealt with this when we got to Epcot, which is part 2 of this Disney mini series! So stay tuned!

So this is my life now

Hello Friends

Happy Friday! I hope this post finds you well.

If you've been around here long enough, you'll know that I suffer from chronic illness, something no one can really see, but I feel every day. I don't really talk about it a whole lot, more so here then in my every day life because I feel that no one wants to hear it after a while... they get tired of the complaining and they don't understand how taxing it can be.

I've been playing around with this post in my head for a while, probably since I was in Virginia for 2 weeks in the middle of June. I am a multitasker when it comes to topics that are discussed on this blog, and when I first was diagnosed with my chronic illness (sometimes called invisible illnesses), I didn't know ANYONE else with issues like mine. No one around me understood what was going on, what I was going through, although Mo and my new boss were doing their best to understand to help me out. Since then though, I have found the incredible chronic illness and Spoonie communities to be my haven, my new dearest friends, and people I knew that I could count on for understanding and support because they were going through it all too!

According to the Urban dictionary, a spoonie "is a person living with chronic illness(es) that identifies with Christine Miserandino's Spoon Theory. Spoonies are people that live with chronic illness; theoretically measuring personal daily abilities much as one would measure the proper amount of spoons needed for an event or occasion... sometimes having an abundance, other times coming up short."

In March of this year I was diagnosed with Fibromyalgia, though they said it goes as far back as 2010. They have me on naproxen and and tylenol, neither of which really helps much. And when things stop helping, I stop taking them. I've tried various things within the realm's of acceptable medication within Aviation standards without being permanently grounded from my job. Now that I am done being ATC (although still in the Army until the VA has determined my disability rating) I have a better chance of getting some help. The hardest part of this is that there are no physical abnormalities that people can see on x-rays or MRI's.... it's all nerve problems.

In July of 2013, I was diagnosed with Gastroesophogeal Reflux Disease (GERD) which is really unpleasant... and is about the only issue I have that can be mostly controlled by medication. They started me on some generic version of Zantac that did absolutely nothing to help me. Her excuse was that she didn't want me on something that I might have to be on for the rest of my life.... which made no sense to me. I used to pop Tums like they were candy. So when I moved to Germany and got a new (and more open-minded and friendly flight surgeon) I asked about a change of medication. They moved me to omeprozole, and while I still get nauseous and shaky and my heart rate still sky rockets to 140 something, it's better then it was before.

In December of 2013 I was diagnosed with Anxiety with Adjustment Disorder. While this is a true issue I have, it was done at the wrong time and for the wrong reasons, and it's against Aviation regulations to have an anxiety issue. I somehow managed to convince and Aeromedical Psychologist that I didn't have anxiety, because I've learned to deal with it over the years, but it stayed on my record. It wasn't until I was put into the MEB process that I openly admitted to having anxiety. The military has this group of people called MFLC (Military Family Life Consultant's) that are pretty much psychologists and psychiatrists, the only difference between them and their counterparts in Behavioral Health is that they don't keep any written record of anything. I think the military implemented them because they knew there were people like me that needed help but couldn't or wouldn't go to behavioral health because they didn't want anything documented. People in the Army have a negative association with Behavioral Health... so people don't want to go be seen for them.

I was diagnosed with tension headaches a few weeks ago, but I think it's more then that. I am going to see my doctor on Monday to have a conversation about a few things that have come up medically in the last couple weeks since my return from Virginia.

One thing I did learn (and am irritated with the military about as a whole) is that after my MRI's, the doctor (not my doctor) who gave me my results said there was nothing significant showing in my MRI's... come to find out (thanks to the doctor in Virginia taking another look at my MRI's) I have Thoracic Degenerative Disk Disease (there are disks in the center of my back that are degenerating). They tried to group it with my Fibromyalgia but nerve pain and degenerating disks are two separate things. It is aggravated by my Fibromyalgia, but it is not caused by it. This is after years of extra weight bearing on my back due to ruck marches and body armor.

The list of conditions the VA is evaluating me for for disability is kind of ridiculous and probably only getting longer. Sometimes it is really annoying and difficult being me, especially since no one here understands (those I work with try to understand.... but like I said earlier... they don't really know because they don't have to live with it themselves). My resting hear rate usually sits between 90 to 115.... and that is just when I am sitting on a couch watching tv or reading. I am so thankful to have been introduced and accepted to the amazing spoonie community, to have found other people who understand what I am going through and accept me and support me without question or judgement. 

They understand how hard it can be to go from walking miles without problems to not being able to walk a couple blocks without pain and fatigue. They understand how annoying constant headaches, nausea, and fatigue can be, how no matter how much you wish you could all the things that you used to do, now you just don't have the energy to do half the things you used to. When I was at Bragg, and even before then, I was a very active person. I would go on tons of walks, go hang out with friends, and have no problems. Now I get exhausted easily, and although I push myself past my limits most days (the Army doesn't really do sick days.... especially when they can't see what is wrong with you) and would just rather spend most of my time laying around in bed, watching movies... although at the same time this is really frustrating because I don't like being still for long....

The thing with chronic illnesses is that you never just have one. They are all interconnected it seems and if you have one... you'll have more (even if you don't realize it at first). I currently have several and I am sure that there are more that are undiagnosed at the time. It wouldn't surprise me because I can't win and they are so connected to each other.