How This Disease Affects Not Just Us but Also Others

Upon being diagnosed with Graves' Disease and severe T.E.D.s (Thyroid Eye Disease, which includes the eye bulging and constant double vision) back in 2009 about this time actually, I started trying to learn as much as I could about it. I read about all the signs, symptoms, potential causes, possible treatments, etc. and how it typically affects us, the ones who actually have to suffer through this (horrible) disease. I also read about how not only will Graves' impact us with the disease but how it may also affect our family, friends, and significant others. You know, while trying to understand that, which was also hard at the time because of everything I was and have been going through since being diagnosed, for awhile there I don't think I was able to fully comprehend that and especially with the eye/vision issues just how much more that would put on Jeff. It's actually really sad when you think about it and lays a huge burden & a bit of guilt on my heart. It's one of the few things that can actually make me sad. I mean, I know how much he loves and cares for me, it's pretty obvious. Aside from the fact we've been together for nearly 16 years now, he shows it to me in so many ways and even more so since being diagnosed. However, just seeing how much this disease, MY DISEASE, puts on HIM, hurts. With my symptoms, vision, all these surgeries, etc. I am currently and have been unable (advised by doctors) to work or drive. Once, I was even trying to babysit for friends of our family, and the only reason my doctor at the time allowed it was because it was only for a few days and my grandmother lived just next door. Now thankfully, after having to hire a lawyer and my doctors submitting over 500 pages of documents proving exactly what was wrong and as to why I couldn't work and/or drive, I do receive disability although it doesn't add up to much after helping with the utilities, food and our dogs cost, not to mention these surgeries are starting to add up. It is nice though to be able to help somewhat. For instance, Jeff's truck was parked in front of our house and someone who didn't have insurance and also drove off, totaled it, so fortunately I was able to help him purchase our used van which is awesome and we both love it. So that's good at least. :)
It just breaks my heart, however, seeing how now he has to be to the driving everywhere and how much harder it seems that things are put on him. Here's an example of a day in the life of Jeff: Anywhere from 5-6am he gets up (depending on what and where his work schedules him for each day). For that next hour until he has to leave, he will take a shower if he didn't go the night before, then lets out whichever dogs are up, takes care of himself, eats breakfast because sometimes he doesn't have the time to eat lunch when he gets busy, then comes to check on me to see if I need anything and to remind me to take my medicines (I'll be honest, sometimes I forget), and then usually has to race off to work which isn't too far thank God. Then after nearly a full, sometimes stressful and demanding work day due to the heavy lifting, getting on his hands and knees, occasionally having to deal with difficult people, I'm telling you he works his butt off. His work is really great about recognizing and appreciating all his hard work. Well, then around 4pm-ish he gets off, and gets to come home, and that's only if he doesn't need to stop at the grocery store, run other errands, etc. Usually when he gets home he might sit down for a few minutes, then gets up to feed and take the dogs outside, if it's a nice day. If not, I feed them inside, then he takes them out. I just can't them all out at the same time like he does. . Then comes in, takes a shower, lets the dogs back in, and then if lucky can relax for the remainder of the evening until he has to repeat it all the next day (unless it's a weekend). Oh and that's also if he doesn't any paperwork or anything else to do. Also, on days that I am either not hungry or don't feel well/can't see enough to, he will make something to eat and even offers me something, saying that he'll make/get whatever I want, even if just something small.
Needless to say, he does so much more than he should have to and it hurts me so much seeing just how much more is put on him. My only hopes are that he can and does realize that I do see everything he does and has to do, and I really do admire, love, respect and appreciate him even more for that, and also that hopefully one day I will get better and/or be able to see well enough to return the favor to him. I really do love him so much and he is my everything. I thank the good Lord for him everyday. I just never realized after being diagnosed with this disease and hearing how much it could affect others, just exactly how much it would. I've asked him if it's too much and if going our separate ways would be easier on him, especially since I know him having to drive me around everywhere and occasionally having to miss work for my surgeries, doctor appointments that I can't get rides to, etc. and he said NO, that he loves me and still wants to be with me! Although that does make me feel really special, loved and extremely cared for, when he says stuff like that and still continues to do all he does on top of caring for me, our dogs, himself, our cat, along with other stray cats in our neighborhood, and more he does, it still hurts and makes me feel guilty. I mean I am still human lol. Regardless, I love him so much and do plan on making it up to him somehow, if even can just take him on the vacation, the break, that he so badly needss and deserves. Not to mention, out of nearly 16 years together, other than a mini trip to Indianapolis, and then to Akron for his cousin's wedding, we have never been on vacation together lol! Either health, work or even just timing around surgeries, or other things got in the way. He has mentioned through the years about never getting to see a beach or the ocean so I'm hoping I can start to feel better soon & get all these surgeries done with, then maybe I can make it happen for him, for us! :) Jeff is truly one of the greatest, noblest, strongest and so much more, men I have ever met. Truly a gem!!! :)))

For Jeff:
When you found me
I felt like I was no one
now after almost 16 years together
I feel like "the one."
You've been there for me
you held me, and held my hand
even with your own problems
with mine, you still try to understand.
You made me a better person
the person I always wanted to be
you didn't do it for yourself
but did it for me.
How can I repay you
can it even be done
I don't know, I will try
all I can say is for me
you're "the one!!!"
-Jessica Gabbard, April 1st, 2014

I love you JEFF!!! Thank you for everything! :)))

 

Ignorance and Getting Past It :))

A little bit hurt right now and trying to not let ignorant comments get to me too much. I am so sick of people automatically assuming because I am overweight that I sit and eat all day. Matter of fact, my doctors have actually said I need to eat more or at least more regularly. Most days I can't even get hungry and don't end up eating until dinner time, if at all. And Lord knows how many people have suggested I need to get a gym pass or start exercising. How am I supposed to do that when majority of the time I am in pain, can't leave my house or the lights are bothering me and my eyes, not to mention the double vision! I have a great idea, why don't you come to my house and just watch how much I ACTUALLY eat. I have had food go bad because of how long it sits on the shelf by me not eating. It really makes me sad though, and I do try to remain positive & just ignore the comments. I would never wish this horrible disease on anyone ever but how would you like it if you got a disease that affects your health, weight and pretty much all the other aspects of your life?! I'm sure you wouldn't like it. The hard thing for me is when I was younger I was just tall, never actually what you would consider overweight. That didn't happen until after I was forced on medications after something horrible happened to me, and the medication interaction didn't mix too well and then caused me to start gaining weight. I had even been asked to join a modeling agency. And then when I first started having symptoms for this disease, other than the eye bulging, the other big one was me losing lots of weight in a very short amount of time. Then they were forced to remove my thyroid due to my condition not showing any sign of getting better, so now depending on my thyroid levels, I can go back and forth between hypo and hyperthyroidism, so the hypo kicks in, making it very hard for me to lose weight. At least that's how my endocrinologist explained it to me. I would love to lose weight but how am I supposed to lose weight with this disease?! Especially with my levels constantly being up and down! I don't know but I'm going to try my hardest because I'm sick of this, and people looking at me funny when I say I don't eat. Please, please anyone who reads this, be careful before you assume and judge people based on something not only do you know nothing about, but also something you don't want to or can't even try to understand. Mean, ignorant, non-productive, judgmental comments DO hurt people and their feelings. Seriously think about what you want to say before you do it, and if you think it could upset someone, DON'T say it. Thank you for letting me rant. Normally I am very happy and try to always stay that way but every now and then, yes I am a human being, my feelings DO get hurt and I do cry. Just not for too long. There will always be haters, people who just don't care. The important thing is to not let them get to you and stay positive and keep moving forward. At least that's my plan. God Bless you all & please always try to stay happy! :))
http://en.wikipedia.org/wiki/Hypothyroidism

Oh the Pain...

Oh my gosh how this pain in my right arm is hurting me so! It like literally sucks the life right out of me, almost making me pass out. It was really bothering me yesterday too, so much that I actually went to bed much earlier than usual. I say that I'm strong, I know that I am but boy how much does this hurt & I hate it!!! It usually starts in my upper right arm and then moves throughout & radiating my entire arm with pain before making its way to my shoulders and across my chest, ending with me aching all over. Fortunately, now it's just in my right arm, am hoping it will just stay there or go away all-together. The worst part about this pain or any pains I ever have it that I HAVE TO endure it, all of it! I cannot take pain medicines or aspirin so unfortunately for me I just have to suck it up. I actually have rips in our mattress on my side of the bed from me gripping it so hard from being in so much pain! I never used to have these pains until I was diagnosed with this disease, Graves' Disease and had to have my thyroid fully removed due to myself & condition just getting worse, with no medication change, steroids or any of the other options my doctors had tried would work. And then from then on it seems as if at least half the days of the week if not more, I am suffering from this very pain I have described. I do wonder, however, if when they were removing my thyroid and accidentally damaged my parathyroid glands, if that could be the cause?! I do know I now have to take calcium supplements and vitamin D2 because of that damage to my parathyroid glands. My calcium levels get low, occasionally too low and I am unable to even lift my feet or depending on where it's affecting me, I will have problems there too, sometimes not even being able to move or get up without being in pain or falling over. Another reason I'm thinking could be how my levels are constantly up and down. My doctor has had me undergo bone density scans, x-rays and I believe some other tests to see what could be the cause, yet so far we don't know for sure. I don't know. I guess I'll continue to try to remain strong and optimistic. I refuse to let this pain win and overcome me. All that does it take away my happiness & prevent me from doing things I love such as spending time with the dogs and Jeff, and of course from trying to raise awareness for this disease & funds for education and research. Hopefully one day there can be a cure. At least that's what I'm working so hard for. I don't want to have to suck up this pain anymore. I will because right now I have to, and I want to be able to go out and do things with friends and family, or even something as simple as church or to the store. We have actually been out and this pain will start, and people say if you don't feel good I understand if you want to go home. I simply tell them that will not make the pain go away, I'll still feel it there, at least I can go out and still try to enjoy myself and have a normal life. I refuse to let it get to me too much. So far, at least as far as we know for sure, I have had this disease for about five years now, and as bad, as severe, as my symptoms have gotten, my doctors and I suspect longer. That's why it's important to get tested and seen as soon as you suspect something may be wrong, if not before even. I honestly can't imagine having this disease and all the pain & everything that comes with it for the rest of my life. I'm only 32 years old. I have a great admiration for those who have had this disease for a long time, and some even when they didn't even have the medical options/techniques we do now. God bless the many out there who have this horrible disease &  please for all our sakes, let there be a cure someday!
Thank you so much to all who read this and please remember to get tested if you haven't already! :))