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17 July 2015

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. 


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