IT'S FINALLY FRIDAY, I'M FREE AGAIN! (well, almost) Okay, okay so I lied! There will be a post today. There was just too much on my mind to not have one! Warning this is long, but I promise promise promise it is worth your time! Well I think so anyway!
First - Mary Shomon and Katie Schwartz joined forces to create I Am the Face of Thyroid Disease and it finally became public! This site is awesome, it's all about showing the diversity of Thyroid patients. I actually have a video up there as well Here's mine I KNOW I KNOW I look like I'm on drugs on that snapshot, but I promise I'm not I actually look normal when you play the video! Check out the site, submit your own video if you want! -actually if you do, let me know! I'll check it out!- but I am so excited about this I think it's amazing! Also if you have time read this press release for the site It's gives a good heads up to the site and let's you know some more about Mary Shomon and Katie Schwartz! Okay I promise that's it for the links!
Next...actually this is last too. It's been happening again! Lately, I've had a few people ask how I stay so happy and positive about life if I have Thyroid problems. And no joke, one person said, "You're Thyroid must have never been that bad since you seem so carefree about life. You obviously don't know what it's like to live with something this awful." HA! Hahahahahahahahaha. Oh bless her. -If you're reading this, please take no offense. But that was definitely my reaction.-
Honestly, I could make a book about my life with health problems, and the majority would be my life with Thyroid Diseases. Actually...I'm going to do it! One of these days I WILL write a book about my life, don't worry it won't be depressing...you know me too well by now to know that I view things in a completely different way to have it be depressing.
So for those of you that haven't read from the beginning of my blog, or just need a recap; I HAVE had it that bad. It's true, this week my levels are perfect -praise the Lord!- but I have had almost 11 years of anything but. Sure 11 years, that might not seem much but remember I'm 22! That's half of my life.
I was diagnosed with Graves' Disease when I was 11, before that it had been severely interfering with my life. I was collapsing on the soccer field -and my Mom thought it was all dramatics, not that she didn't have reason too...I was a pretty dramatic child- but I had never done things such as collapse during sports, I couldn't stop moving and shaking, I drove my family NUTS because I was always going 100 miles an hour. They used to time me to see how long I could sit still. After I was diagnosed it didn't even take two years to go into remission. We thought that was it, no more worries I'm good to go. Perfect timing too, since I was just about to enter High School.
Freshman year was fine, I rarely even thought about it. Sophomore year however was totally different. I never felt good, there was always something wrong, I just felt SO off. And then I started doing really bad in school. I failed a couple classes (I'd always had As and Bs), and so no big surprise I was grounded all the time! We tried calling the Dr, No no no you're fine you're in remission remember? At the end of the year we went back and surprise surprise my levels were the worst they've ever been. The Dr told me I was going to go into a coma soon and die from how bad they were. (being told you're gonna die at 15, yeah...so are we still sure I've never had it that bad?) We had my Thyroid removed by RAI that summer and was told with Thyroid Hormone replacement I would be fine for the rest of my life. Dr visits once maybe twice a year, maybe adjusting medication every few years...no big deal. Well that right there was a lie, they could never get my levels regulated, my dose changed every 2 months and I gained 40 pounds over the next two years! But I was happy, so happy with my life that I just did not care.
Then I went to college and that's when everything changed. I gained 50 pounds in 1 semester at college. O.M.G. right?! My parent's were not happy with that, and no matter what I said about my eating habits, I'd gained way too much weight for them to believe me. Sure I was eating worse than I had when I lived at home, but when I compared what I ate against what the other girls I lived with ate, I should have gained 5 or so pounds. That Christmas break we had my levels tested again and HELLO HASHIMOTO'S DISEASE! I switched to hypo, and it was REALLY bad. I saw this specialist in Beverly Hills, and right off the bat he said I was lying about having my Thyroid removed. He said "No one's levels can be this bad if they've had their Thyroid removed." He even made me have an ultrasound on my neck to make sure it wasn't there, and when I proved I was right he goes, "Huh." I continued to get worse through his care and he blamed it on me, because he was so awesome there's no way I could have gotten worse under him. "You're eating soy aren't you!" "You don't take your pills do you!" I told him at one point that I would have someone follow me with a video camera to prove I wasn't doing either of those.
During the next year and a half at that University I had lots of struggles. I started doing bad in school once again, I started failing test after test. And only my roommates can verify that I started studying days in advance, I just could not remember anything. I started taking 3-5 hour naps during the day and still having no energy. I would forget that I was talking to my friends and would walk away mid-sentence. And the worse day of all I went into a lecture hall for an exam and couldn't remember my own name. I burst out of there and ran all the way back to my room. Even looking at my drivers license and school I.D. didn't convince me of my name, it just didn't seem to ring a bell. Also, I would work my butt off to lose some weight, then I would go right back to where I had been before (like...within a week I would gain 20-30 pounds back) By the time I left that school -after my Sophomore year was complete- I was 70 pounds heavier than when I had started.
It's been two and a half years since then, and my life is still the same roller coaster. From when I left school to my wedding day -exactly 3 months later- I gained another 30 pounds. Over the next 4 months I gained another 20 pounds. The next 5 months? Another 30 pounds putting me at my highest of 330 pounds. (oh if I didn't already say...when this whole journey started I weighed 140 and I'm 5 feet 8 inches with an athletic build) In that time, my new Endo told me that I had tumors, and after a little over a week of expensive and extensive testing we found out that no I did not have tumors -PTL!- That first day after she told me that was really rough, but I got over it before I even found out that I didn't even have them! And they still could NOT get my medication regulated until just a couple months ago. Since before I even gained most of my weight my dose has been in the 200smcg. Right now it's 275mcg. MOST Thyroid patients I talk to take anywhere from 25mcg-75mcg. Mine's so high they don't even have a pill for it, I have to take 2. And that's JUST my Thyroid, that doesn't even cover all the other health problems I have.
So ma'am if you're reading this, I'm truly sorry that you see your life through your Thyroid problems, and I'm sorry you think I'm a joke. But I HAVE had it that bad. I just would rather look at the world through rose colored glasses than through a disease.
Through all of this, as my family and friends know...I've ALWAYS been so happy. Sure it helps that I was smiling minutes after coming out of the womb (not joking...I have a picture I'll have to upload it another day), but that's not it; there are three parts to this. The main thing is my relationship with God, He has helped me through all of this. And because of Him I have so much peace and happiness about my diseases. Yea I said it, I'm happy about my disease, and my weight gain. I have come to respect it so much it's ridiculous. But here's how. I would not be the woman I am today, had I not had all of these struggles. Who knows where I would be, all I know is that it wouldn't be good. For a long time only my immediate family knew about my Thyroid problems, only recently has it started coming out; and that's mostly because of this blog. And that's another thing to be thankful for. I've met all of you! I love talking to you guys every couple days! I love getting comments and hearing updates from y'all! So 1. My relationship with God, 2. I'm naturally a happy person, and 3. I decided long ago that I would no longer let my Thyroid control my life.
I think the problem with most people who have Thyroid diseases, is that they let their disease rule them. I promise y'all it is SO amazing taking your life back. It's like a dead weight just falls off as soon as you do. And I'm not saying your symptoms will stop, or your levels will become perfect. Because most likely you'll always have to deal with those things. But if you take your life back, it doesn't become "dealing" with it. It becomes something small in the back of your mind. It makes it so much easier to live with. Promise. When I share my story with people now I get *gasp* "OH honey how do you deal with that? Are you okay now?" Every time I laugh and say, "Honestly, I'm fine. It's just how my life is." And like I've told you guys, I love my life. I don't want people feeling sorry for me, there are so many other people in the world who have it worse than me.
Okay I'm done...Sorry I know that's long but you can't say I didn't warn ya :) You guys are wonderful! Have a great weekend. Until next time!!
Molly, good for you for taking your life back. I too struggle with hypothyroidism and for the first couple of years after my diagnosis, coupled with the major storm of life I was in (which I think made it worse from the chronic stress)I let it get me down. Then I decided one day, I can do this. Why let it dictate how I'm going to live from day to day literally. My levels were over >100 and my lab was not able to pinpoint the exact number beyond that. My meds got as high as 175 mg at one time. My numbers were all over the place! And I could tell you something and 30 seconds later not remember what I told you. My family was complaining about my forgetfulness and my lack of concentration. The first doc I was treating under told me I was lazy and not exercising enough. Three miles a day of walking would literally wear me out and I'd end up taking a nap when I got back. But I was not exercising according to someone that was never there to see if I was or wasn't. I would later get into an endo who not only begin properly treating my thyroid, he actually listened to me when I brought in my tracking charts showing what I was doing and not writing it off as me being lazy or self-medicating with caffeine. Instead he fixed it according to how I felt. YAY for awesome docs!! He also diagnosed my PCOS which was a major part of the problem. We still fought with numbers for a year and a half before getting them to level out. But the main thing is, it got me to a point where I could decide that this was not going to rule me anymore!! I still have days where I "crash" and I just deal with them. But for the most part I have taken control of my situation. As for the joy, you are doing what God intended us to do, not let the situation steal our joy. We just learned that last night in church. Habbukah shows us that. No matter what our situation, we should trust in God, praise him, and he will continue to supply us with our joy to make our feet like deer, and to set us to walk on our high hills. Good for you for not letting years of being told it's you and not medical-induced to continue to fight and not let it steal your joy. Keep it up. You are a shining light for us that still struggle.
ReplyDeletelove the comment about sitting still... wish my family would have thought to take it where yours did... mine just screamed "can't you ever be still"... even then I thought to my 12 yr old self... Nope I can't and I don't know why....
ReplyDeleteI can't imagine going through this as a young adult. I think I was probably hypo as a teen but nothing to your level and no one knew it. I can't imagine being a teen, knowing exactly what was wrong and then not be able to do anything about it and then have awful doctors on top of it all? You're a very strong and positive person and, i have to tell you, reading your blog is really helping me stay positive with everything i'm going through. I went from having anorexia and being underweight to having hypo and gaining 70lbs very fast, so it's taken a toll on me both physically and mentally. Recovering from anorexia was one of the most difficult things I've ever done and then, add dealing with hypothyroidism to my recovery seems almost insurmountable. I know my recovery from anorexia is threatened by my weight gain due to hypothyroidism and I struggle daily. But you are so positive and you've had to deal with so much and you're still so positive about it? Its really inspiring. You've gone through so much and my hypothyroidism is not even in the same ballpark as what you've gone through and the amount of suffering and pain you've faced is really unimaginable. And to keep so positive through the whole thing is truly amazing and really it's something I strive to be like. Thank you for your continual blogging and inspiration.
ReplyDeleteThe great news is that when you discover that you've got low thyroid condition, you are able to treat it! By getting on the ideal food plan, doing the correct activities and taking desiccated bovine thyroid , it can really improve your life.
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