I’ve been humbled over the past year… I’ve always considered myself to be a humble (well, with moments, OK… stretches of time where I’m a little bit of an egoist.) person. This blog is just a snap shot of a year in my life. I am sure that I have left a few things out here and there. I was humbled this time around by an illness that gave me a crazy year of perspectives and well, humbling moments. A year ago (4/14/10), I was given the diagnosis of Hashimoto’s Disease. There is no cure and as it progresses, it get's worse before treatment is even applied. There is only management until that point and that in itself can be humbling considering the wide variety of symptoms that can occur. It resonates with me though daily… There is no cure. That does not sit well in my brain. I have no concept of something not getting better. Especially something that is not getting better... In me. Oh, it’s not going to kill me and most would think that it's no big deal (mostly because they cannot put themselves in my shoes). It’s just making life uncomfortable sometimes and that, is the humbling part. There are times when it’s REALLY uncomfortable and I just have to keep moving even if I feel like I just can't keep moving anymore. I can’t believe sometimes that I’ve been living with this for a year. And in actuality, I've been living with this to some degree for a lot longer than a year... The doctors only "caught it" a year ago.
When I began this journey, I was wrapped in a whirlwind of tests and wonder since no one could really put all my symptoms together: shaking hands, coordination issues, dizziness, pressure in my head, racing heartbeat, cold and hot flashes, vision problems, memory issues, speach problems, and on and on and on... I did a month of cancer testing and that is a month I’ll never get back. Oh, it wasn’t much for me to do considering it was just my blood and fluids the people at the lab wanted. It WAS just the feeling looming over my head that I was being tested for some very hard to find adrenal and endocrine tumors. And let's not forget my favorite Neuroblastoma. I also had to be tied to a heart monitor for a month to see how the ticker was actually functioning. I tell ya, you have not lived until you’ve been lying on the couch and watch the monitor show your heart rate climb to 400bpm then crash to around 70bpm in seconds (talk about perspective). For the record, my heart is STILL doing this little trick occasionally (though you'll never know it unless you are with me) and it tires me out almost instantly. If you think of it, when I said that I fell asleep at like 6pm, that's usually why. Oh, and I’ve also seen my heart in real time on ultrasound… Like a train wreck, I had to watch it completely facinated. And all the while I am thinking that I should not see this much of me internally; mostly because I’ve seen an ultrasound of my Thyroid at this point as well. Trust me when I say, it’s disintegrating… Slowly. Anyway, I made it through the cancer testing unscathed and cancer free at least. Life changed for me the moment I was finally given a diagnosis and it’s taken me almost a year to get things under some kind of control. Mostly because the doctors said I'd be stabilized and on medication in a month... Well, it's been a year and still... Nothing but a bunch of symptoms. But, I know what it is now, at least.
I learned a lot in a year’s time. I think first and foremost, I learned who can stand with me and who is just going to fall away or hang out on the periphery of my life. Being “sick”, made me intolerant of a lot of old baggage I was carrying since stress tends to make me feel worse. Suddenly, trying to cling to things that were out dated seemed silly and frivolous. Why waste all that time on people and things that weren’t going to be there when you needed them most? It hurt sometimes. More than I expected. Still, I didn’t (and still don’t ) have the energy to spare on literally forcing a square peg in a round hole. I’ve always said that I’m not going to work harder and I don’t expect anyone else to work harder. I just never expected to see some not work at all. And even still, as I look back on the year, I am so thankful for those that are still with me and a few new people that have joined me along the way. Without good people in my life, I am sure that I would be a lot sicker than I am. People help keep my stress level down (as well as occasionally drive it up. Let's be real here OK). Those that I can talk to about things happening to me. Those that are good in my life, I want them to stick around. I can't make them stick around though. Everyone makes their own decisions based on what ever reasoning they have. And again, I’m not going to work harder so, I have no problem with letting people go. Except that it hurts on several levels and while I feel saddened by this, all I can do is move on.
You see, life with an autoimmune disease, is just that… LIFE. I wake up each day and go to work and come home. No problem. Or at least no problem that the outside world can see. I'm not going to complain about every little thing that hurts me or makes me feel "off". I'll talk about it, but I am far from complaining. When I do talk about things, I just want to be heard. I don't need to be fixed... Apparently, I can't be fixed yet anyway. I just want someone to listen. In this years’ time, I have learned how to live again. To manage my highs and my lows on my own. After all, I’m ultimately the one that has to live with this. Everyone else is on the periphery. They can't stop it. they can't give me back my sense of smell. They can't take the pain away. they certainly can't slow my heart down when it races. What they can do is be there to listen when I need them. they can check on me when I'm quiet (a sign I am sick). And most importantly just be the friends that I need in my life. Uncomplicated. Drama free. You see, I spent a number of months seeking out answers and seeking out treatment. Subsequently, my answer seeking lead to more questions and my treatment, well that kept getting denied. Every couple of month, my symptoms would rear their ugly heads in a big way and I would run back to the doctor or the lab for more tests and more… DISAPPOINTMENT. Denial of treatment to me was equated with denial of feeling better. Each time I went back to the doctor, I was given the same speech. That it was all in my head. That it was anxiety (it was anxiety… Anxiety of not getting a straight answer). That my symptoms were normal part of aging and that I’d need to learn to live with them. That while I have Hashimoto's, my "numbers" are not in range of treatment even though I have horrible symptoms. I’d say it was not until after the first of the year (2011) that I finally woke up. I could remember struggling to make sense of a lot of things happening in my life. Cognitively, I was a mess and just trying to express myself as well as keep myself on an even keel. I can remember driving through Keene NH and finally realizing that I was chasing after something that would tie me to a pill for the rest of my life. I’d actually been doing fine on the gluten free diet, and supplementing with vitamins. Why the HELL was I chasing a synthetic medication when I was living rather organically? I cried a lot that day as well as on a lot of other days in this past year because I realized what a complete and utter basket case I had become. I had let the disease control me instead of me controlling the disease. Subsequently, I destroyed a lot of relationships with this mentality. Within a few days, I canceled my remaining doctor’s appointment. I was done with doctors. I became determined to manage this disease on my own. Until I can’t manage it anymore. Until that day, there is no point in my seeking out treatment. I’m already treating myself with natural solutions. Diet and exercise have a lot to do with the course of this disease. So, now I try and eat healthy as well as live healthy. This would include mentally and physically and some days are harder than others still.
What I have learned in the past year is that gluten is the enemy of my Thyroid. It’s the gluten molecules that mimic the thyroid and trigger the attacks. Those attacks sometimes result in debilitating pain in my joints and my very fast heart rate among other symptoms. The joint issues are mostly because Hashimoto’s is an inflammatory disease and when my joints swell, I can’t move around easily and the pain clouds my thoughts and vision. And when my Thyroid acts up, it speeds up my heart and respiratory rate since the overabundance of hormones seem to dictate those systems. So, I cut it out and while the attacks have not completely gone, they have lessened to a degree. Remember as the Thyroid dies it sometimes lets out a tremendous amount of hormone on it's own inspite of a gluten free diet. as well effecting the same things as the gluten. This also means that my Thyroid is ceasing to work and I am becoming slower or hypothyroid. I’m not looking forward to this as it seems to be a struggle to stay active and when the heart and the respritory rate slow, it will be a different sessation to get use too as well as some discomfort again. Right now, I have the pleasure of being primarily Hyperthyroid with a few days here and there of being hypothyroid. (lucky me, I can flip flop!) Although I know that the change is slowly happening. Again, this past year has taught me to really pay attention to how I am functioning on many different levels. I’ve never been more in tune with myself.
So, here’s the very not humbled part of me. Here’s the very tute my own horn and shout “Hell yeah, even with a disease, I can do this!”. You see, I live by myself and manage my life on my own rather nicely. Mix in a year of ups and downs with an autoimmune disease to get through and you too would be a little more confident. A little more forthright. A little more go after what you want. My disease for the better part of this year since my diagnosis has changed me for the better too. It’s opened my eyes to a new way of thinking and taking roads less traveled to see if I can. And just the other day, I had an “F you Hashimoto’s moment”. I went out to enjoy the sunshine and went for a hike. My body was egging me on to take a jog and I listened. I had not jogged since well before my diagnosis and it felt dam good. It felt like I had bested something within me. It felt like for a moment, I didn't have a disease. I was proud of myself for once again doing something that I thought I could not do anymore. I have Hashimoto’s Disease. It does not have me.
If you are reading this and don’t get it, that’s OK. If you are reading this and jumping to your own conclusions without asking questions, shame on you. All you need to do is ask questions to understand and gain clarity. I learned this much in my life. It’s been a year of understanding myself and how I can function in this world with this ‘thing’. Many have under estimated me and I have occasionally over estimated myself. At least I can say I’ve tried and I’ve learned in a year how to live with Hashimoto’s disease instead of letting it run my life. I never wanted to be that girl that went from doctor to doctor. I almost became that person. So glad I stopped and came to my sense. If you are reading this and saying to yourself, ‘Way to go. Way to come to an understanding and way to live’, thanks. The journey is just beginning with other battles to be fought as this disease progresses and gets tougher. Stick by and watch what happens (won't you?). After all, most battles are not fought alone.
