On Feeling Xtra Xtra Small…

Yesterday, my mother and I met for some good old fashioned retail therapy. I will say that as a therapist, I clinically recommend this to clear the mind. Plus, you just might find a strange boost to your moral that causes you to shout giddy in the store… Let me explain:

I had been feeling down. Seriously down. It had been a very rough week in the professional world. Pretty much akin to me being run over repeatedly with a truck. I’d been feeling kind of lonely so, instead of sitting in the house and ruminating over recent events. I left for a little mom time and shopping. Yes, at my age (this will play in later), I still need Mom time. She can sometimes screw my head on straighter than any professional therapist I have seen or am currently seeing.

My point is that we have a good time. Once I get over the initial uncomfortable feeling of overwhelming her with the latest news from my life. Usually around lunch time, it starts lightening up although we get down to our serious talking over a meal. She always laughs at me as I try and order off the menu. It’s kind of funny when I want Asian glazed salmon and the waiter says “well, you can have the Asian glazed salmon. Except it will just be regular grilled salmon… the glaze is not gluten free. “Ok, so don’t keep calling it Asian glazed salmon… It’s just grilled salmon for those of us with the sensitivity. And it’s always funny how the presentation on the plate goes down. Ahh, life with a food sensitivity. OK, so I digressed again… You should be used to it by now. My point is that my mother and I see things very differently. She tries to get me to see the glass as half full. All the time. I like to see it half full and then spilled all over the floor in the next minute. Followed by three quarters full a moment later. It’s a little crazy in my head most of the time. Especially when I don’t know which way situations are going to go? She also doesn’t get that I can’t really relax when things like this are going on. I need to keep busy so that my mind doesn’t completely over take me and I crumple in a heap on my couch never to get up again. If I keep moving then I can resolve some pretty amazing situations and maybe not act so impulsive when I need to. As we know impulsivity can kill any situation that you want a favorable outcome in. I’ll tell you what I had to do later…

So, when participating in this retail therapy day, there needs to be a mission. I wanted some new cloths. Seeing as its winter, I get very tired of the big bulky sweaters and things like that. Sometimes you can barely see me in all the layers that I need to wear. Due to certain issues, it is hard for me to find cloths. Or at least cloths for my professional age bracket in the size that I need. No, I’m by no means, well, huge… On the contrary, I’m a very tiny person. At my age, to shop in the junior department seems a little creepy. I can use it for cloths to go out in (if I actually went out). Professionally, I don’t think a judge would let me in a court room in some of those outfits. We are striking out and I am getting really cranky since I hate cloths shopping because of this. And I know what you are thinking… Trust me; I have just as much anxiety as the larger members of world. It’s not easy being tiny either. I just have to keep quiet since well, I’m small. No one wants to hear the problems of a tiny girl. Especially when she is my age and has my issues. OK, when it’s me.

Mom and I are now attempting to go to a store that we have no luck in at all usually. I actually suggested it since I had not been in there in at least a year. Why not, what could it hurt? If the same old same happens then it’ll be status quo. So, I’m digging through the rack… I’m in the small section. I find a few things to try on. As I’m doing just that, I realize that in my hand is…. An extra extra small top. Hmmm, can I possibly fit myself into this and look good? Should I even try or should I just give in and find a small. Not even just an extra small but a small. I slip into it… It fits. I look at myself and the same thought crosses my mind… I’m really really tiny. I smile. I exit the changing room and summon my mother. She’s about 10 feet away and I say very loudly as I'm grinning and pointing at myself.… Extra Extra small. I should also mention that at my last Doc visit, it was discovered that I gained 8 pounds... Now, like someone else I know, I'm wondering where I put it since... Well, Extra Extra Small. Women around me shoot me looks and glare and then look away quickly. I know why I am an extra extra small. They don’t. It’s not something that I wanted. I’ll take it and I’ll flaunt it since I look good for being sick. But to be almost middle aged and be an extra extra small, that’s gotta say something. Sometimes, the raw deal is not so raw. Especially when you find a perfect ego boost after a very crappy week. Scratch that... Three weeks. Which isn't really fair to say since there were some bright spots. It's just been a strange period of time.

And now here I sit, the morning after. Still thinking of what’s to come. Hoping for the best in that situation. Hoping and of course being prepared for anything. Oh yeah, in spite of my ego boost and having a store full of women once again really dislike me (for some reason, this does not bother me), I needed to keep busy last night. It started with flipping some mattresses on mhy own. I wanted to put a queen bed from my spare room in my bed room and flip the full bed in my bedroom to the spare room. I don’t have a lot of help around here so; I decided that would be the project. Well, I got half of it done. The mattresses are flipped.   The problem lies in the fact that the spare room is upstairs in my home. I’m just one very tiny, extra extra small person. I could only do so much before I realized I may be in over my head. A head that still needed to be kept busy last night. I think that if the day goes either way, I might get to the box springs and frames. Sometimes, you just have to do things to help yourself and take time to clear your head. If only to come back and face what you need to with grace. Whether it’s finding an ego boost or trying to accomplish a project on your own. Things are not always as bad as they seem and maybe the glass is not spilled at all. It’s just waiting for you to drink from it and enjoy it. 

Everybody Lies...

I have this saying that keeps running through my head… “Everybody lies”. Yes, I am guilty of it as well. I lie to myself every day it seems that my symptoms will just go away. That the pain will lessen instead of worsen. I lie to myself that “this time” things will be different. I lie to myself that my behaviors will not echo the same sabotaging antics that they always do. The truth is that we are all creatures of habit. We are all prone to insanity. We lie to ourselves that we will do things different next time and yet, we fall into old habits. The kids that I work with will under report drug use, cutting, and other violent, and other wise illegal and harmful acts to avoid trouble. That’s the key… To avoid trouble. So, we lie to ourselves and each other. And where am I going with this one???

My point is that recently, I came to the conclusion that I’m done with doctors. This whole Hashimoto’s thing has completely consumed my life and I’d like it to not do that anymore. So, I made the choice to not go to doctor after doctor. I’m done. Of course, I’m lying right now. I’m going to one more ARNP and then I’m officially done. The thing of it is, I’m going to the ARNP with kind of a half hearted enthusiasm. I hold out no hope for this one either. So, I lie to myself. And here’s the twist of it all. Not only do we lie to ourselves and to each other, we don’t listen either. I’m the queen of ignoring things and by things; I usually mean symptoms within myself. I’m the queen of pushing through and not listening to myself and what my body is experiencing. My point is that others don’t listen either. People seem to think that this is me giving up and giving in to the disease. They want me to talk about it constantly and they want me to go to doctor after doctor. I don’t want to be the girl who has a life ruled by doctors. I don’t to be the girl who spends week after week in the doctor’s office and they get to know her on a first name basis. I don’t want to be the girl who has test after test. Let’s face it, if you dig long enough, you will find something wrong. And then the lie will start again. You’re better off living in blissful ignorance rather than knowing every little thing that is wrong. Sometimes, it’s better that way…. And I lie because I'll be back in the doc's for regular blood draws and what not. I'm not done with them. I'm just done with them.

I realize now that I’ve wasted the better part of January caught in a state of perpetual concern and worry. I’ve been caught up with the pursuit of treatment that I’d forgotten how to live. I got caught up with my job and forgot how to have fun. Most importantly, I got caught up in perseverating over untrue emotions that I forgot how to progress through my day. I lost sight of myself and the forest for the trees. I lied to myself and forgot to just let things happen. I’m great at this and that in turn really kills anything that I’m hoping for. So, I go into damage control mode and that in turn really kills anything that I am hoping for. I’d be lying at this point if I didn’t say that I am really damaged goods. So, there you have it. My point is that in the last blog, I alluded to some pretty big worries. I’m still worried. I’m still hopeful. And at the same time, anyone who knows me knows I’m not a very hopeful person. I expect the worst all the time. I can compartmentalize like it’s no one’s business so, that is what saves me. I don’t want to though. Not anymore. And I’d be lying if I didn’t add that I’ll do it again… It, like lying is a survival technique. I'm no good at just leting things be and I'm no good at just letting things grow. I'm great at rushing things and smothering things or worse, just letting things go because I assume to much. And then I lie to myself to make myself feel better.

So, here is me not lying… In this blog. Here is me putting things out to the universe in the hope that someone else is experiencing the same thing or at the very least listening intently. I love myself and it’s taken me a long time to get here. I can be a very fun lovign and happy go lucky person who sems to have this rahter intense side to her that is a little hard to take sometimes. Whether I’m lying to survive or not, I am basically a good person who wants her disease to go away. Who wants her relationships to flourish. Who has some really good things happening in her life and wants to see them continue to grow and thrive regardless of how hard it is for her to containe her anxiety and her own worry.  I’m of course lying to myself since I’m going to be falling back into old habits no matter how many times I try and pull myself out of things. I just hope that in the aftermath, the truth is greater than the fiction and that life sides with the hopeful cynic.

Miss Independent....

So, 3:30am and I’m wide awake. Is it insomnia if you were able to get at least 3 hours of sleep before you woke up? I don’t think so in this case. I’ve not been able to sleep through the night consistently for a while now and truthfully, I fought tonight for an hour so I've been up since 2:30am. I have days here and there where I can squeeze out about 6 hours. And for the most part, even those nights I’m waking up and falling back to sleep within 15 minutes. Tonight… This morning… My bodies not having it. So, I’m awake… Fully awake. My mind is spinning. I had to get up and sit up since laying down I could hear my heart beat in my ears and that is what tends to keep me up. The palpitations are really loud these days. They seem to go away when I sit up. Especially if they wake me up. Mind blowing and unfucking believable if you ask me. Oh yeah, there’s nothing wrong with me in so far as my Hashimoto’s is concerned. This is normal… This is my life. You know what I say… Whatever.

There’s nothing like an early morning to get your mind going and really get you thinking. Not just about what ever medical thing you have going on… Thinking about well, everything.  It seems that the cards have been stacked against me for a while but I keep fighting. I keep pushing myself. I’ve been doing all this on my own for so long, I am starting to wonder if I am capable of letting someone else in to help me. I want soneone else to come in and help me. I'm just not good at asking them to do that. What I mean is that I’ve lived on my own and essentially alone for so long that I’m pretty sure that my independence will be the death of me. And yet, I am tired of doing things on my own. Especially now that I’m “sick”. And oh yeah, I’m not really sick by modern medical standards. I just have this strange cluster of symptoms that gives me the illusion that I am sick. It’s all in my head remember, since I look perfectly healthy.

I digress and tangent again… Back to the independence thing. Yeah, I’m super independent and truthfully I love it. I love the fact that in spite of all the odds stacked against me, I’ve been able to claw my way out of some pretty outrageous situations and eek out a decent living on my own. With a little help, I’ve even bought my own home and now it’s up to me to maintain it. No one else is around to do things so, I need to keep going. I have this adaptability within me that while I hate change, I can fit into any new situations relatively well. Once I get through some uncomfortable feelings and resolve myself to going with it. I mean, I pretty much rearranged my life in 2002 after leaving radio behind. I lived off of nothing with no help from a now ex that would not even lend me emotional support let alone physical support. Yet he would yell at me that I didn't ask for help. And I survived many devastating blows to my psyche up to now. Least I forget about the whole” near death if I had made one wrong decision I would not be here” experience. Yeah, kinda makes me a little stronger than most. My point is that I’m pretty independent and that has been my downfall. And now that I have this Hashimoto’s thing, I’m still independent. There’s one problem… I’m just so tired. I really just want someone to help me every now and again. My body is exhausted and I am not sure how I’m going to keep going some days. And I push myself… Because no one else is around to do anything and I can sit here and cry or I can get moving. So, that's what I do. I pull myself together and get moving. And even today, after being up since about 2:30ish, I’ll still have to keep going. Welcome to adulthood, no one said it would be like this. We all thought it would be fun. Or at least a more constant form of fun. No one said that it would be work. Let alone work with an autoimmune disease. I try not to let it bother me but after the fifth time shoveling a driveway in the winter, I’m a little tired and just want someone to take care of me for a while. I need a break from myself.

Along with my unique set of circumstances, I’ve lived a life essentially alone. And the prospect of remaining that way is real to me. Not really happy about that and I’m trying to have that not happen. I have people in my life but they are scattered around the country and pretty much distance kills us with getting together on a regular basis. Life got busy and I forgot to make close friends. Not to mention the fact that I kept moving so, I was never around long enough to have people stay in my life. And finding that special person to share your life with now it’s tough, when you have not dated for a long time. I’m so use to being the old married couple after spending 8 years with the same guy. Now, I’m trying to have a relationship with someone who is supportive and nice and really trying to put up with my crazy manic antics. Far from a rebound guy, I’m trying really hard to not unleash all the crazy at once. My problem is that I get so wrapped up in the confusion of my life that I’m pretty sure I’m chasing him away rather than bringing him into my life. I'm good at a relationship when it's a year old. When it's brand new, not so much. Mostly because people have just kind of walked away from me without warning and I'm so scared that will happen again. All this of course has little to do with the concept of Hashimoto’s unless I can somehow tie it to my manic thoughts. Bottom line is that I’m 38 years old and it’s clear to me that I’ve missed the boat on quite a few things due to my independence. I’m 38 years old and I’ve probably missed the boat on having children of my own and that is a depressing thought in itself. I can tie that directly to the Hashimoto’s as there are fertility issues tied into the disease. I’m 38 years old and just hoping that this next phase of life is a little easier because up until now, life has been a struggle. I’m just really looking for some people to share my life with and that one special guy to have coffee with in the morning and share my day with at night. I think I’ve found him… I just have to get through the growing pains of a new relationship first. Here’s hoping that in spite of all that I have stacked against me, life sides with the hopeful skeptic. The girl who wants the fairytale but has settled into the nightmare since that seems to be what she is used to.   It’s so much more than a Hashimoto’s thing sometimes…

And the Cat Get's Treatment Before the Human... Seriously?

So, here’s a development that I never thought I’d type. My mother has this cat at her house. Weezie is sort of the last cat standing from my childhood. Beloved pet if you will. Even if she is kind of stand offish and a little cranky half the time when you try and pat her. Anyway, I digress. She has been diagnosed with, of all things, Hyperthyroidism. Are you kidding me? A cat. Let alone a cat ‘related’ to me, has something similar to me. OK, to be fair, I knew that pets can get the same basic diseases as humans. After all, cats can get things like AIDS and leukemia. We all know that pets can get colds and it’s so cute when a cat sneezes. The treatments can be a little different though. Of course, in the case of Weezie and her hyperthyroid, she gets medication. AND, she’s already been put on medication (I’ve been waiting how long?). Not to mention the fact that her ‘Doc’ ran through the same options that I got… Surgery, radiation, medication. Mom chose medication. Weezies old after all and probably can't take much of anything else. I’d like to choose medication… There’s one problem, NO ONE WILL OFFER IT TO ME. So, that’s right, a CAT gets thyroid treatment before a human. Doesn’t anyone else find that the least bit amusing and slightly disturbing? I’m having a decent laugh over it. Really, it was probably the best news I’ve gotten all day. In the meantime, I am living footloose and medication free. Wrapped up in a bunch of symptoms that apparently dont' need much more than well, NOTHING.

                Yeah, I’m not going to run through the symptoms that I experience. We all know them by now. I’m happy to hear that the cat won’t be experiencing any of them and at the same time, I wonder if they have the same experience. I on the other hand have formulated a plan. I’m just going to live my life.Simple right? for all my good, bad, and indifferent days, I’ll continue to take all the vitamins in the world and eat healthy (yummy organic and gluten free. Really it's all good stuff. Well, minus the bread). I’ll continue to get exercise when I can. Shoveling in the winter really does count if you think of it. Of course, when the sun comes out again and the blasted snow stops falling, Hello, hiking trails and mountain climbing! Not to mention gardening, mowing the lawn, and hopefully some good old fashioned yard games with some of the special people in my life. And in the meantime, I will try and do my yoga when I am able to. Some days, I am more flexible than others.

                And speaking of the special people in my life, remember last blog where I said I was holding back. I came clean. I spilled it and you know, he didn’t run. He didn’t freak. He didn’t do anything. He just let me spill it and he listened. He let me crawl into his lap and he just listened. Just what I wanted him to do. Of course, he gave me the friendly warning to stop researching... I have. I'm done learning about all there is to know about Hashimoto's disease. Let alone thyroid diseases in general. Unless something new comes out, I'm done. No more freaking myself out. Anyway, back to my experience. See, I’m really not looking for someone outside of the medical field to fix me.  I’m just looking to feel supported and a little less crazy. Which he did beautifully and I thanked him for that. Now, the medical field, the docs and people that are supposed to take care and prevent diseases, I want them to fix me. They let me down. And they continue to let me down. But that's right, Western medicine does not prevent things. We manage and treat after the fact. So, TREAT ME already! Please? So, that I don't have to be crazy.

                My mother’s cat was put on thyroid medication before I was. For the exact same issues that I have been having. Doctors all along have been trying to tell me it’s all in my head. It’s moments like these that make me think, it’s all in my head. It’s coming up on a year for me. I think it was like 3 months for the cat.

A Warped Sense of Normal...Thank's Hashimoto's. Seriously... It's been fun. (Written Yesterday 1/13/11)

The other day, I just realized, I'm DONE.
                I’m a few months away from a year anniversary… Relax, it’s not THAT anniversary and that’s another story all together. I’m talking about the anniversary of being diagnosed with a Thyroid Disease. So, why am I writing this so early? What’s the reason for the premature musing? Well, I’m done. That’s right, pure and simple, I’m done. Done with doc’s for the time being. Done with being told that everything is normal. Sure, my labs are normal (for the most part) even if there are a few levels that I am watching on my own. The good thing is that a few of my thyroid levels are holding steady or low. Doesn’t mean I am symptom free. Doesn’t mean I’m “normal”. It just means that I’m in a good cycle. It just means that I seem to have my lab work done when my Thyroid is behaving. So, as a result of having countless (OK 3 going on 4) Docs tell me that I’m “normal”, I’m just… Done.
                Oh, I should say that this does not mean that I am giving up my Gluten Free Lifestyle. I happen to like the results: less weight gain, a non-swollen thyroid, and no hot flashes from eating something bad. I’m also not done with the vitamin supplements although I may have to tweak them a bit and reduce some to see if there’s an improvement in some of my labs (if there isn’t then there may be other issues). I’m just done with the pursuit of medications and other preventative treatments. After all, the doc’s seem to tell me that I don’t need anything. You know, even though I have all these symptoms and I’m sometimes not comfortable at all because my joints are SCREAMING. But whatever right, modern medicine says I’m normal.
                So, in a years’ time, here’ s what normal looks like: My undiagnosed heart murmur is now palpitations (they seem to happen when I lay on my left side) and let’s not forget the racing heartbeat that I can have on occasion and even at rest. The mental fog continues and it’s still freakin’ hilarious when I can’t think of a word, lose my train of thought, or otherwise have those ADD moments. Consequently, the mental fog is the easiest to cover. The sore throat, dry throat, general “fullness” feeling where my thyroid is, and let’s not forget the vocal changes and cough are all great. Especially since I’m a singer at heart and I’d really like to keep a voice to do something with it. Another favorite thing in this normal experience is the muscle weakness, stiff achy and swollen joints (including fingers and toes). This is especially great when they happen all at once.  These are of course not to over shadow anything else that is happening however, the loss of my sense of smell (not always a bad thing) and the fact that I sometimes can’t see things right in front of my face are just the best! Oh, and let’s not forget the fact that I am now a self-regulating furnace and can wake up anyone sleeping next to me with my incredible 20 minute hot flashes (glad I could warm you up). I could go on but I need something to write about on the year anniversary officially. Really, this is the fun part of waiting for my thyroid to die so that I can have medication… I can hardly wait to feel what it feels like to be not normal and to be actually truly and otherwise SICK. Well, sick by modern medicine standards… This is a blast right now. Really, I can hardly wait.
                And you know I spout off about all this stuff that’s happening to me and you’d never know by looking at me. You’d never know by sitting next to me. Well, unless I’m having a hot flash. In spite of all this, I’m still able to function (although some days are slower than others) and hold a job and have a social life. I try and keep things quiet and still sometimes, on my really bad days, I really just want to crawl into someone’s lap and have him tell me that I can forget about all this stuff and just really be normal. Like the normal that I was a little over a year ago. Even though apparently, I was sick… I just didn’t know it. Of course, I also want him to stick around, so I tone down A LOT. There’s no need to really scare him since we just started down our road and we are still new to each other. I'd like to see him stick around and experience things through my eyes and well, I'd like to enjoy really gettign to know him.  And after all, according to the Doc’s, what I am going through, this is all normal. So, maybe that’s the key… Not knowing. And to that end, you now see why I’m done. Modern medicine has kind of let the thyroid disease population down… Why is it that we need to feel bad in order to feel good again? I’m just at the beginning of this road too. Can hardly wait for year two.

2010... The year of Hashimoto's (and a few other things). (originally written 12/26/10)

Looking back at the year, I have to step all the way back into 2009 first. You remember 2009 right? Bought a house, broke up with the longtime boyfriend, and essentially set my life on its side.  Yeah, that was the year that set the tone for this year (2010). And to be fair, 2010 started off in a really cool way. In the dead of winter, when the house was not even a home yet, I organized a house warming reunion for a handful of old college friends. These were friends from my first degree at Lyndon State. I had not seen some for about 15 years. It was good to go back there (to Lyndon I mean), even if it was just for a weekend at my house. We’ve done a lot of changing over the years (some more evident than others). And as the weekend came to an end, we all went back to our lives and 2010 was set into motion officially. Mind you we all did the classic “This is going to be MY year” declaration. Looking back, I think it really was someone else’s year… I did not ask for a lot of this. And yet, I would not change a thing. Let me explain…
March saw me going to the doctor for the first time in a long time. OK, I went for a mandatory work physical and that set off this crazy rollercoaster ride that has defined the year and nearly exhausted me. An ARNP had discovered a cluster of symptoms and felt my neck to discover a “slightly enlarged thyroid” and recommended that I go see a doctor to get it checked out. So, that’s what I did. The first doc accused me of being over anxious and still ran the blood tests. My symptoms pointed to Hyperthyroidism for sure and for good measure, he threw in a month long cardiac study (surprise, you have a heart murmur and runs of both tachycardia and bradycardia). Not to mention the cancer testing for endocrine, adrenal, and thyroid cancer. Not to mention, my favorite; Neuroblastoma. Oh yeah, the ultrasound of my beating heart… While cool, was not anything that I wanted either. I'm a firm believer that I should not have to see what is going on in there. And yet, like a train wreck, I could not look away. Yeah, that was a month I’ll never get back. Never did get the results for the cancer testing but I would think that if they were conclusive, someone would have called me.
OK, so this internal med doc could not find anything wrong and so he sent me to an endocrinologist. She in turn ultrasounded my actual thyroid and it’s being destroyed she said. Destroyed? By what? By you she said. You have Hashimoto’s Thyroiditis. She said it like it was no big deal. I’ve got what??? Seriously, an actual auto immune disease. Honest to goodness so, what next? Well, nothing we wait for it to die. Then you can go on meds when your numbers are right. Oh, so in the meantime, I have symptoms and I’m miserable and you want me to wait until I feel worse? Umm, that’s what happens, my thyroid dies and I’m going to continue to feel worse. What a great doc you are.  So, this brings me up to May of 2010.
The next thing I know, I am put on medical leave from work… Are you freaking kidding me? A month on the couch and all I want to do is get on with my life. To be fair, I did have some very bad days during this month. Still, it was uncalled for. I had to use all my vacation, sick, and personal time. Whatever… Of course when I came back, I was twice as behind.  And I was determined to not only get caught up. I was determined to make myself well too.
During that month off, I made the decision to go gluten free. It’s supposed to help ward off auto immune attacks on the thyroid since the gluten molecules mimic the thyroid gland. No molecules to mimic means that I get to feel a little relief. I also added some exercise (yoga) and A LOT of supplements that help with various symptoms. At this point, I’d encourage you to read my other Hashimoto’s blogs to get a grip on my year. It all makes sense then. Anyway, it turns out that this disease is as unique as the person that gets it. For me, that’s really unique! So, where am I at now?
Moving through the summer, I see myself starting to date again… BIG step considering I spent 8 years with one guy. And dating, at my age… Very different. Very challenging.  I was happy to get out and meet people. I was trying to have a life and a job at the same time. And then I needed to start looking for another job. Things at my present job over the summer were going south fast. So, now I’m trying to maintain my health, trying to have a social life, and look for a new career… Yeah, I’m exhausted and my emotions are all over the place. AND then it happens…. I get a call about one of my resumes. Within 10 minutes of meeting, I’m pretty sure that I have the job. Sure enough, within 48 hours, I do.
 Now at the end of September, I am able to give notice and start a very new and more normalized life. No more sacrificing my personal time and health for an intense and time consuming job. I can now design my job around my life. I could not be happier with the change in career. Getting settled in the new job has been easy. Now at the end of December, I can say that I have settled into a decent rhythm. Life has a beat to it again and I am not dragging myself from shift to shift. I am designing my day to fit in some of the things I need to do as well as some fun things. I don’t’ have to sacrifice weekends and I can actually go out at night. I have a life again where 2009 and throughout this year, saw me putting life on the back burner.
2010 has been very much about recreating a life I had long lost. 2010 was very much a wakeup call as far as my health is concerned. 2010, while it had some pretty low points and I would argue that my Hashimoto’s had nothing and everything to do with it all the same, has ended on a more up lifting note than any year I have seen in a long time. I’m smiling more than ever and I am actually looking forward to 2011 as a Pretty Good Year for myself and someone that I consider to be very special to me. May we build upon what we have started as a foundation in 2010 in 2011. Lots more to learn about one another and I am looking forward to it. Of course, I have a doctor’s appointment to almost start off the year and even that I am confident will get to the bottom of my racing heart and lack of sleep and other symptoms that I have but find it now pointless to bring up daily (I'll just live with them for now). I’m determined to leave 2010 behind as a redefining year and move into 2011 as a year to be happy and healthy!

My Hashimoto's story... Now 6 months old and the blog continues... Seriously. (Originally written Halloween 2010)

Just over six months now from my diagnosis and this is what I have learned…. I got such a raw deal. Hashimoto’s is no real laughing matter no matter how hard I laugh at myself. So, the thyroid gland is literally the center of the universe when it comes to systems of the body. I’ve been affected from the top of my head to the tip of my toes. And depending on what symptom I have is predominantly how I think, feel, and generally function. If I’m in a hyper stage: my hair is fine, thin, and falling out. My heart is completely sped up and pounding out of my chest with little effort. My nails are thin break off and my joints ache. I’m processing food twice as fast as most people and well, you get the picture with that problem. No weight gain… weight loss and the whole digestive track is a mess (and that’s putting it nicely).I’m a little manic and don’t sleep that much. This is the time when the palpitations keep me up at night and sometimes all night.  If I’m in a hypo stage: my hair is thick, course and dry but still falling out (Hooray, for consistency). My heart is slower but now it just hurts and when it does slow down, I feel it crash. It’s not a heart attack but goodness it feels like it sometimes and if I didn’t know any better, I’d be a regular at a doctor’s office. My nails are thick and brittle and my joints… They ache. No real weight gain but I feel gross and full. I won’t eat that much if at all. I sleep a lot though so, I’m beyond well rested. Nothing like getting 12 hours of sleep and still wanting more.
Then of course, there is the mental aspect of this disease for which I really got a raw deal. There is nothing like being stopped dead in a conversation because you either got lost in thought due to ADD or you completely lost the word you were looking for. For example, I was shaking out the cats blanket and when asked what I was doing by someone, I could not think of the work blanket… It was not only a simple word, IT WAS IN MY HANDS! How could that be possible? Names, places, facts, all seem to leak out my brain. It’s wicked embarrassing when you are trying to talk to someone (say on a first date) and you can’t seem to remember anything that he told you. Not to mention the wandering around the house from room to room because you can’t remember why you went into that room in the first place. I need to write down EVERYTHING and when you are trying to learn a new job, that’s a challenge. I’m doing the best I can though and that is all that matters. I should also mention that my eyes, ears, sense of smell and coordination of well, EVERY MUSCLE in my body works when they all feel like it. To varying degrees, things are not working normally. Of all, I really miss my sense of smell. I wish my hearing would be a little more stable. And my eye sight is really starting to suck out at night. Not to mention the fact that I can be looking for something right in front of me and I can’t see it. But wait, if I blink, it sometimes appears. Nice huh? And I should remind you that what I wrote in previous blogs is still true. Doc’s won’t treat until my numbers are “in range” of treatment… Seriously???
And finally, let me just mention the dating life I am experiencing… I’m gluten free which keeps the weight off when I am hypo so, that makes going out to eat a real challenge. I’d rather stay at home and cook than deal with restaurant staff that don’t have a clue of a difference between rice and rice pilaf (here’s a clue… Rice Pilaf has wheat in it.. If it touches anything else on the plate, I can’t eat it any of it). I’m that date that will still be eating when you are done because she had to send her plate back 5 times. I can’t eat a lot of things that most people can because I’ll get sick and that means that even the kitchen at my house does not have things like sugar, anything that is considered processed foods,  good snacks that taste yummy to most normal people… No beer except my gluten free beer. But there is lots of wine. So, that covers the food except to mention that I can’t have MSG either… Can’t even go to a Chinese place without getting ill. Not sure about sushi… I think I need to try that on a Saturday alone in case I need to recover on Sunday. So, frustrating for me and for some dates. I explain it to them in the simplest terms possible. Tell them mostly about the food issues and they wrinkle their noses… Then I usually cook them a meal and they change their tune.  Eating gluten free and organic can be very good. Of course, I go into the rest of the symptoms when I feel comfortable and a few things happen. They either say they don’t want to hear about it, want to put me in a bubble for fear I will break, or they just don’t call me back.  Sorry guys but to know me is to know all of me… And be able to handle the ugly parts. I guess it’s a good tool to weed out people. However, some good ones have surprised me by not being able to handle it. Even when I tell them that I don’t complain about my aches and pains, tell them that you’ll forget I am sick after a while, and tell them that I don’t’ expect them to go gluten free. The most surprising was a guy asking me to just ignore it and all my health regime and have a beer. Go ahead; cheat a little he says… Are you trying to kill me??? Yes, even dating is interesting with an autoimmune disease… And I don’t even look sick. I look good for having it.
So, the fight for understanding and medication goes on… How long before I get meds? It’s been 6 months now and counting… Since I have new health insurance due to my job change, I have to wait and pick a new Endocrinologist… Also on my wish list; A cardiac work up, MRI of my head, and testing for Adrenal Fatigue which I can already tell I have…. Nice to have confirmation though. It's been fun really but I never asked for all this... I want a do over or something.

Ouch, my aching joints... Hashimoto's too? Really? (Originally Written 9/4/10)

(I've been writing this series of notes not as a way of saying "Poor Me" or as a way to worry anyone but, to raise awareness of what this whole Hashimoto's thing is about. If you have questions, PLEASE ASK.)
I had noticed recently that my ankles were hurting. Not just the hurt of being on my feet too much but, a deep hurting. I in turn also noticed that this hurt was traveling up my right shin. Then I noticed the give away, my fingers just hurt and refused to work with me when I needed to type something, grip something, or fasten anything like necklace. So I rub them vigorously as if that will bring them back to life... And I mumble... Hashimoto's. I say this because as it turns out, dull achy painful joints are a part of the diagnosis for some. I'm a pretty active person and I'm not usually affected by a little ache. This time, it's different. This time, it's a tougher ach to make disappear.
I use to think this was such a "cute" disease. It's just a simple thyroid issue. It's hypothyroidism and I'll be fine. It's such a common thing so, why am I complaining and carrying on so much? I should just let it go and move on. Nope, not that simple. My doctor will not put me on the standard medication Synthroid until my levels get higher than normal. Does that mean that my symptoms have to keep increasing until I can't stand it anymore? Not big on pain here and the heart palpitations alone are frightening and painful sometimes. Not such a "cute" disease anymore. Not just a simple hypothyroid case either. This disease is rather complex and I don't think very many really understand it.
I understand what is going on within me though. I should not have to know things like Leaky Gut Syndrome, Adrenal Fatigue, or the fact that I am now suddenly Gluten free. I should not have to know that I have an increased chance of developing rheumatoid arthritis, lupus, or MS in my still young life. Not to mention any of the other complications that can develop the longer this goes untreated. And did I mention the doc's don't really know how long I ahve had it???  I also understand that the things I do now, can decrease my chances of developing those things. Still not much I can do about the leaky gut, adrenal fatigue, or the gluten thing... Those are here to stay.
I get annoyed with myself because I've become that patron at a restaurant. I'm the one that has to send her meal back because the waitress said rice when she meant rice pilaf and now the pilaf is touching a scallop so I can't eat any of it. I've become that girl who could unknowingly eat something bad and fall ill almost immediately (fun right?). I've become that girl that no one really understands why she is so picky about her food (You're curious but afraid to ask.). I've become the high maintenance date that has very few options when she goes out. I can’t even drink beer anymore unless it's gluten free. The upside is that I was a good cook before, I'm a great gluten free cook now!
To me, autoimmune diseases are like peeling an onion. There are more layers than just a simple set of numbers from blood work. I need to treat the whole disease and if that means, changing my diet and adding a crap load (yes, I typed crap load) of supplements to get me through the day, I'll do it. I am currently taking Calcium, Magnesium, Glucosamine, Vit B Complex, Vit C, and a Mulit for active women. To wait until this Hashimoto's Disease turns into Hypothyroidism is absurd to me. Mostly because in the mean time, I get to feel the affects of things like adrenal fatigue because those glands have been working overtime for way too long. And the leaky gut syndrome since now my digestion is all out of whack because I'm a lover of bread for 37 years. That and the fact that my whole system has been working overtime for just way way to long. There are bound to be a few issues. And yet a doctor won't touch me until my levels are pushed into hypothyroidism... It is my hope that they figure out what is going on. Some kind of root cause to this disease and they treat it instead of making us wait it out. Because waiting it out hurts and is uncomfortable some days and makes a person endure more than she nees to sometimes.
In the mean time, my hair is still falling out, my hands still shake a little, I can look at a word and not even know what it is because my brain is too slow to connect to my eyes (wait for it, it will catch up). Not to mention that I sometimes search for a word that I know for a minute or two and the fact that I more often than not trip over simple words now when speaking. I use to be such a good speaker but whatever right, it's just Hashimoto's Disease. I get cranky easily these days ( But I feel who wouldn't with this?!?) too. Basic motor function is a problem some days and I can now trip on flat surfaces or my foot drags ever so slightly. So, I either look like frakenstein dragging his foot or as if I've been drinking. And yet, I want to be clear that I am still very independent and very much a functioning member of society. I still hold a job and maintain my own home (by my self). I just have some really bad days sometimes and I'm prone to going to bed before 10 pm now. I don't sleep like a rock since the palpitations wake me up again and again. But I'll be fine until it turns into Hypothyroidism... Then it will be time to treat me. Seriously?  I would love to know.

My right eyebrow... Really? Another Hashimoto's update. :) (Originally written 7/9/10)

I woke up the other morning and looked in the mirror... My right eyebrow had shrunk during the night. I'm sure that it was not really during the night but now, no amount of shaping will bring it back... Really, my right eyebrow? Seriously? My eyelashes have gotten thinner too. I use to have such long full eye lashes. People were jealous of them. Now, you could call them cute at best... At least my eyes are still pretty. And the clumps of hair in the shower continue. At least my family blessed me with the gene for thick hair. It will take Hashimoto's a while to affect it seriously. But my right eyebrow... Really? Hashimoto's decimated it. Awesome. Autoimmune diseases are great. Especially one that is as unique as the person who contracted it (So I am researching).
My voice is changing... More importantly, it's effecting my singing voice. I'm a little upset about this. I can still sing. I'm just noticing that the notes cannot be sustained for as long as I use to. Even still, my talking voice is raspy sometimes and my throat goes dry with little effort. Just out of no where, it will dry up and then I start coughing. I can be drinking something... Anything... And my voice will go hoarse and my throat will dry out. Wicked nice... So, I fight it with water and more fluids. Followed closely by gum and or some kind of hard candy (I feel so old). Let's not forget (how could I), the feeling like I have a sore throat all the time. Just a mild one... No biggy. Enough to be annoying. AAaaaand this feeling that there is something sitting at the base of my throat (kind of where my neck meets the shoulders). No, it's not just my neck... It just feels full. Of what, who knows.
I started taking better care of myself though. It turns out that allergy meds have cleared up my sinuses and have allowed for easier breathing. I've added calcium and magnesium to my supplement regimen and that seems to curb my involuntary movements and my tremors. *Yay* No more shaking hands! My biggest step has been going Gluten free... No more wheat for Rachel. Not even eating products that are made near wheat products. Nope, no more wheat for me. I feel so much better and I am sure that is what is making me not gain weight. Research has shown that going gluten free for Hashimoto's sufferers is the key to feeling good. And the next thing to exit the diet... High Fructose Corn Syrup. It's a little more difficult to get rid of that... The process is slow but each change, makes me feel better. I cut out half the caffeine from my morning coffee. Trust me, this was no small feet for me. A dedicated coffee and coffee mate drinker... I ran out of coffee mate this morning. Tomorrow, it's coffee and half-n-half. No sugar. Sugar is apparently bad too. I'm still thinking of that one. So, this has been quite a journey already... But I'm feeling positive.
I can still exercise (thank goodness!)... this ties into my cycling though. I go through days of being very sluggish and hypothyroid and then I go through days of being very up and hyperthyroid. Current state as a mater of fact is hyper... Trust me. When you have this, you get very much in tune with yourself. You know every change good or bad is related to something in the autoimmune condition. Where was I? dam... ADD is bad in the hyper time. Oh, yeah.... Exercising. I can so still do a lot of things. Planning a kayak day right now and I go hiking and walking when I can. People will know when I'm hypo... I won't really move too fast and I'll pretty much tell you that I'm going home to sleep. No amount of eating right will control this. I try and exercise each day. I own my own home so there is usually something physical that I need to do around here and that counts as exercise (hello, shoveling the driveway and mowing the lawn). Oh, speaking of all this exercise I added glucosamine for my aching joints. Turns out those aches I have had... Hashimoto's related. Those supplements have not done much for my muscle weakness but, I'm working on it. Research is slow these days. The main point is that I can still lead a very active life. As long as I recognize when I need to sleep. Of course, my body will just fall asleep when I need it so, there's really no arguing.
It has taken me a while to understand exactly what I have going on here. Hashimoto's while most doctors treat it as hypothyroidism, should be treated as an autoimmune disease... after all, that is what it is. I was lucky, my doctors caught mine really early... OR am I lucky? This disease can have some serious down bad awful days. The fact that it has had such an effect on my heart (speeding up to 400 bpm and then crashing in seconds to around 70) really sucks and makes me so tired. Mentally, it's kind of funny when I can't think of a word or I can't focus. I can pretty well distinguinsh between my slow, I can't think of the right word but I can see it in my mind, phase. And my 'OhmygodIcan'tfocusonanythinganditallrunstogether' hyperphase... So incredible the differences between the two distinct cycles I have the pleasure of still experiencing. Really cool when they happen days apart. Literally, I can go to bed in one phase and wake up in another. What's really interesting is that I can type and spell a word perfectly... No red squiggly line at all, my mind is telling me that it is spelled wrong.... Umm, really, I am just thinking of another word because my brain is like a toss salad at this point. Not to worry, it's not perminant. I'm perfectly fine and able to correct myself. I have a nice internal laugh at myself though. I think that's one of the most importnat things I have learned outside of really eating healthy and taking care of myself... I can laugh at myself.

Now, if only I could just figure out why my right eyebrow? Why is one of the markers of this disease the fact that the person loose the majority of their eyebrows?...

Sometimes these things just need perspective... I've got what????? Seriously? (Originally written 4/16/10)

I’ve got what? Hashimoto’s huh? Cool name… I guess if you are going to be sick, it’s gotta have a cool name. Much better than the plain old run of the mill hyper or hypothyroidism… So, what’s this all about? Hashimoto’s Thyroiditis Thyroidtoxicosis… Hmmm, now that’s a little much and a little less cool. But it can’t be that bad right I mean lots of people I know have some of these issues. OH, it means I get both symptoms of the hyper and the hypothyroid… Wonderful. I guess when I get sick I mean business. At least it’s treatable right. So, what am I in for??
So, first I get the symptoms of hyperthyroid… Not bad, I can eat all I want and still lose weight. I’ll amaze people at parties with my eating skills. Wait a minute, you mean everything will be sped up within me and this may have gone unchecked for years??? Years… Really? Like even the rate of my hair and nail growth? That explains A LOT. My hands have been shaking since the late 90’s and I’m fond of saying ‘I’m tired’ and yawning all the time. Hmmm, maybe there was something to my nervousness after all. I thought it was crazy when my heart would beat really fast too. My ex use to call me the ‘little heater’ because I was always hot (temp wise) and if I was not wearing make-up he’d always wonder why my face was so red (all the time) too. This was starting over *sigh* 8 years ago… That’s a long time to have these symptoms unchecked… Still to be almost 38 and a size 0… Kind of cool. Shame how I got here though. Oh, and my hair will get really fine and fall out along with velvet feeling skin. Greeaaaaat. I mean soft skin is cool… Hair falling out, not so much.
So, what about now? I mean today? I’m diagnosed with with Hashimoto’s and how is that different and when does it change? What happens next??? Seriously…. I slow down? Is that even possible? I mean, I’m always a high energy gal. Oh, in about a month, it’s going to suck huh? So, mid May, I’ll be hating life? We’ll see about that. So, what’s to look forward too?
I’m going to be more tired? I didn’t think that was possible since well, being sped up all these years has really tired me out (in reality). I can get more tired? Awesome… I might gain some weight and at the same time have a decreased appetite? Hmmm, sounds a little hard to do one with the other if you ask me. My thyroid gland is going to enlarge while it’s effectively being destroyed by my own body and it’s going to get so enlarged that it will change my voice, make it horse, aaaand give me a sore throat… Well, that’s already happening so, what else? Bring it. Aches and pains I can handle in my joints (nothing new there). Muscle weakness like the bottom just drops out of my legs and I feel like I’m going to fall. Ok, that’s what that feeling is… Not cool at all. And my arms feel wicked heavy too. Awesome. Really, this is already happening to me. I’m going to get cold A LOT… That explains the sweater where I use to be called the ‘little heater’ I guess I’m a freezer now. But I’m not that cold… Yet. Still, it is almost May and I have yet to lose the sweaters. A bonus that my heart rate will slow down. That will be great! Sometimes it’s felt like it was going to beat out of my chest! Oh, and as a result my respiratory rate will go down and I may have trouble breathing… Aaaaaand my heart might enlarge due to damage? Maybe even stop? Yeah… Great.That's what the heart monitor is for... To see the damage? My face is going to puff out… Well, that might be cute. I might experience depression Hmmmm. Nothing I can’t really handle. There’s more??? OK…
Hashimoto’s will affect my cognitive functioning… Man, that’s going to hit me where I live, I’m a brain girl. I need to use my brain. So, I’m going to forget things and my thinking will be slow along with my ability to process information. This can’t be. Right? What, there’s MORE? I’m going to have speech problems with pronouncing words or even remembering how to pronounce them. I may not be able to recall familiar words? Like when I could not remember what the thing on the ceiling that alerts someone to a fire is called? Just like that?? Really? Ok, so some of this is really happening. I think you can stop now… I’m really in for it with this thing. Hashimoto’s Thyroiditis thyroidtoxicosis… I have a chance of always fluctuating between the two extremes…Can be controlled with medication (hopeful). I just have to get there first to the slow end of things since the hyper phase is never permanent (even if it was for like 8 years). Which means I need to wait until my thyroid dies and I am effectively hypothyroid. Hmmmm… Either way this is not much fun already and I'm starting to slow down which means that it's happening. And this is So far beyond the cool name of my autoimmune disease. Awesome. And my hair is going to keep falling out too…
Big changes… Must learn to keep a sense of humor and optimism… Not all of this may happen and heck, treatment might just keep it at bay.
I'm not even going to think about what it could lead to... Yet. ;)

Moving on over and in...

I was bloging on facebook... Time to move on up and out. This stuff has got to mean something to someone right?