Blogtastic

I was so touched by a blog post I found today that was written about a week ago. I think I wasn't supposed to find it until today. I went to work for a couple of hours this morning for an important meeting, and spent almost the entire time trying to hide the fact that I wanted to crawl under the table and die. I think it was showing outwardly however, because I looked across the long board room table at one of my dear friends and colleagues and saw her looking at me with a slightly concerned face. I was sweating, clammy, shaking a bit, and having a really really hard time feeling like the air I was getting into my lungs would be enough to suffice. I had to yawn every thirty-five seconds to get more air...at a board meeting with a VIP of the company. There are only so many "eye yawns" a girl can do! There was stabbing pain in my right rib cage, it almost feels like my liver is going to get up and "peace out". Throw up the ol' peace sign and take off. I don't know if it's my liver or anything, don't get me wrong. But it's right there, somewhere around there. And it makes me want to cry.

So I went back to my desk and saw my supervisor who was very pleased that I made it in. See, she had taken some of those terms I discussed back to her house after work a few days ago and looked them up. She read up on Lupron, endo, PCOS, hashimoto's. And she said that she thought of me all night, and that she hugged her three year old daughter long and hard that night. She felt badly for taking her own ability to have her precious girl for granted. She told me to go home, get well, don't come back until I'm better, and that she was impressed by me. I couldn't hold the tears back all the way, although I fought off the good ol' burst of emotions. Just a single tear drop, and then a thank you. I got in my car and took a deep unsatisfying breath. I'm alone, but in wonderful company.

I started looking around at some of my blogs a few minutes ago and wound up back on Stuff Christians Like (a wonderfully comical blog, check it out!). For the first time since I started reading this blog a while back I went to one of the links on his side bar, another blog he writes called 97 Seconds With God. I don't know why I never checked it out before, but I was led to right then. His post blew me away. Something I needed to hear so badly! This is the verse he based his post on from Matthew 11:28-30:

28 "Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light."

He went on to push home a fundamental truth that I forget so much in my depth of guilt or insecurity. God wants me as I am. I don'tt need to find completion, erase all doubt, banish my imperfections, or accept every beautiful blessing He's offering before I come and bask in His gift. He just wants me to come, and just bask in it. He wants to be with me on my journey, not meet me after I've finished myself. He wants to hold my hand, carry me. And He breaks me so that I'll know I can't do it without Him. And oh man, I sure can't.

It's a beautiful post, go check it out. See what it does for you, if you feel like it might be something you're interested in. If not, maybe you'll find it exactly when you need it.

So, I'm not at work, but I'm not giving up on it. I'm just buckling down for the journey, and resting in the thought of being carried through it, instead of tiring my legs again. And I'm gonna go to those doctor's appointments with an open mind, a healthy appetite for wisdom, and a faith that I won't have to decide on my own, or make it alone.

Now, pardon the Too Much Info, it's time to go poo in a cup. Love that Western Medicine!!

Wheat/Gluten-Free Halloween Costumes?

So I followed up my successful grocery shopping trip with a semi-successful costume shopping trip tonight. I had to make it quick because I wasn't feeling well at ALL. But I got a halo and a white boa... boring I know. But Ben and I are just gonna hang out with a few friends for a little bit, and no one is dressing up very much so it'll be cute. Ben bought horns. Haha, nice.

I got fed up yesterday afternoon when the shoulder pain kept getting worse and worse and I called my primary care doc. They fit me in for an appointment today and I saw the physician's assistant. She said my lungs sound good, but wants me to see a pulmonary specialist- that appt. is on Monday. She also sent me for a myriad of blood work and other fun tests...and I'll get those results in two weeks. Great. She gave me an inhaler and some singulair for the meantime because of the tightness to see if it will get any better. We'll see! I also set up an appointment with the endocrinologist who biopsied my thyroid mass last year. He's gonna do an ultrasound to see what's going on with the mass and then I'm going to force him to consider treating my hashimoto's. At least consider it. That's in three weeks. And I haven't heard anything about the Lupron yet. Razzle Dazzle.

So the big story for the day is that I wasn't 100% convinced about the endo diet until today. I knew we were gonna test for celiac disease today and you're not supposed to be gluten free before the test. So last night Ben and I went to Olive Garden and I swallowed (practically whole) a huge plate of angel hair pasta with meat sauce and four of the most scrumptious breadsticks ever. Then this morning I had a bunch of pita chips because, well, they're delicious. And then I got the blood work. So after the blood work I was feeling sorry for myself and so, being the genius that I am, I stopped and got some junk food. I bought Jalapeno potato chips and yummy peanut butter cups. Well about an hour after the blood test I started getting some stomach cramps. And then...the full on brutal awful disgusting stomach/abdomen pain that I have gotten so accustomed to. I mean BAD again. Gnarley. I'm officially going all organic, totally unprocessed, wheat/gluten/sugar/dairy/soy free from now on. I mean, my goodness. Tummy, please forgive me. I've learned my lesson! If you're having stomach or abdomen pain, try it. See what happens. It's unreal the difference it made free from processed food. Crazy!

Grocery Shopping

So I made it to work yesterday! Yes, it wasn't until 1:30 in the afternoon, but it was still good to get out and feel normal for a bit. I'm gonna do the same today, go in after lunch and get a little work in. Should be good...and my co-workers still remember me. :)

I don't know why, I can't understand it, but the pain in my chest and shoulder is getting worse again. I'm on continuous birth control, so it shouldn't be doing the cycle thing like it was when I was off the pill. It hurts all the time, but for the last three months it gets much worse during my period. Well, now it hurts worse and I'm not on my period. I mean, I guess I technically should be if we're counting, but I'm doing continuous BC. Weird. Maybe it's because I've been trying to do a little more activity. I was hoping that's not it, because I really really want to move around more. But this is making it difficult. I miss exercise dag nabbit!!!! Ben gave me a shoulder rub last night that made it go away at that moment. But as soon as he stopped digging into my shoulder it came back. And my chest feels tight. I'm trying not to get psycho about it, but I'm wondering if it's something else. I got a chest x-ray and a CT scan of my chest and all was normal. So doc says that it has to be endo. Argh! But why would it make my chest feel tight, like I can't get enough air?

Alright, onto more uplifting news. I went grocery shopping last night! And I found a new snack for the endo diet who craves some sweet deliciousness- Pamela's Dark Chocolate Chocolate Chunk Cookies. I mean it just rolls off the tongue! ;) They're not rock hard like most wheat-free, gluten-free, dairy-free treats. They do contain a bit of Soy though, so if it's a no-go for you on the soy track, watch out. But it's not much, so I went for it. I mean, moderation, right? I also loaded up on organic fruit at the g-store and bought some organic chicken and turkey meat. I'm still loving hummus dip from TJ's, and for my lazy moments- Trader Joe's Mushroom Rice Noodle Soup Bowl is totally a craving fixer. I crave salt like mad for some reason, and this helps. I tried the Fig Newman's (wheat free, dairy free fig newtons) and while they're comical, not my fave.

Alright, gonna go get ready for work. I talked to one of my supervisors last night at work about everything that's been going on with me and she was really understanding. She even had me write some of the words down like Lupron, Diaphragmatic Endometriosis, Polycystic Ovary Syndrome, and Hashimoto's disease so she could look them up and do some research for herself. I love that. More people should learn about endo and these other diseases that are so common for women, but go unspoken in so many cases. I was embarrassed about it all when I was first dealing with it. I wouldn't really talk much about it, let alone mention the word infertility to any of my friends. But now I think it's so important and therapeutic to talk about it and educate others. I feel for all of those women and girls who don't know where to turn. I hope they find some answers, and figure out that they're not alone!

Nearly Monday Already???

That dreaded question: will I be able to make it into work? I'm feeling ok today, had a couple of bouts of bad pain there for a bit after lunch but that's it. I had a burrito bowl, no tortilla, just chicken, black beans, rice, salsa, and lettuce. I thought that was pretty good! I don't know why I would have felt sick afterward. Sick and sharp pain. Weird. Well anyway, I think I'll be ok to go to work for at least a while tomorrow.

Now for the good stuff. Last night was Awesome! We went to Christopher's and had a delicious six course meal that I honestly didn't want to end. Started with a seafood platter and foie gras in some form that I couldn't write out if I was forced. Loved all of that. Then onto the first actual course of french onion soup that rivaled the onion soup I had in...France! Still not quite that wonderful, I mean, I took a picture of the onion soup I had in France. I wanted a keepsake. Yeah, that good. But this onion soup was the best I've had in the states by far. Onto the second course of a bib lettuce salad with a light viniagarette, topped with sweet oranges and green apples. Then we had the best course of the meal- seared scallops that I just wanted to curl up with. Seriously, I'd roll around in them if Christopher wouldn't mind. Succulent. Then we had truffle infused filet mignon encrusted with ground pink peppercorn. Not as good as the scallops but really delicious still. Then a course of artisan cheeses, some sort of humble fog something or other and a brie that was really soft and velvety. I felt guilty about eating this course the most...but moving on- our final course was a chocolate tower filled with the most unbelievable chocolate mousse I've ever had. So airy but also rich and dense. I can't even describe it correctly. Just go, eat it, you'll see. :) And in a side note that is only a side note because of my undending guilt- we had wine pairings with each course. If you only knew. I could cry about it right now, but I'm commanding my hormones; locking it up. Delicious!

Ok, back to the actual reason for this blog. That was a scrumptious little break though, wasn't it? :) So, I'm going back and forth again about the Lupron. Thanks to Jeanne's blog, (which is on my blog list- check it out, she's very informative and has been through the gamut) I got to hear a blogtalkradio session about endometriosis and some really interesting facts and ideas. Lupron definitely wasn't talked about nicely, but a lot of the main feedback was that it would be much better to do continuous birth control pills...which I've tried and haven't responded to very well. I don't know, still rolling it around.

Hopefully I won't have much time to roll it around and will get a call soon. For now, it's day by day- get to work when I can- try to live normally! :)

Glorious Weekend

Mainly glorious because I don't have to feel guilty about not being at work, and I get to hang out with my amazing BF all day long :) I mean, he should really stop going to work too. Sympathy sick days? haha!

I'm feeling alright today, I only went to work for a couple of hours yesterday for a meeting, and started feeling pretty sluggish near the end of it. I've been getting super light headed at times lately, I think maybe from a lack of exercise or movement? But I also started getting super sweaty during the meeting, like I was gonna pass out or something. So I just left afterward and laid down for the rest of the afternoon and evening. Today's been better so far, still feel fragile in my abdomen- like I can't stretch or move around a lot, or I can't push on my abdomen without it hurting. I know, so don't push on it! Ha, but I mean, shouldn't I be able to push on it without it hurting?

Tonight is my dad's birthday dinner! We're going to a fancy restaurant and sitting at the chef's table, having the chef's menu, and my diet is going OUT the window. I've been doing a really good job, no wheat, dairy or red meat at all for a while now. So I'm stoked for a little treat. And the best is that I have no idea what it will be. I love chef's menus! If they think it's good, I'll trust the chef. Delish!

I'm getting SO anxious about the Lupron shot. I haven't heard anything yet, and I want to get this thing started. I'm just going to talk myself out of it if they don't hurry up. And since the pain is starting to get better, I don't want to feel like I made the wrong decision by going with the shot. But I've heard that the Lupron is a really good thing for the endo, no matter how bad it hurts. Plus, it's not like I'm 100% or anything, I still couldn't go for a walk or dance by any means. And I really need to get back to actually exercising. That's when I'll feel healthy again.

I think I might try to lay out in the sun a little today. It's gorgeous outside, and I hate being pale. It's amazing what a little color on your skin will do for the ol' self esteem! :)

I Sat At My ACTUAL Desk Today!

I went to work!!! I know it seems like a normal function, one that most wouldn't think very exciting, but I'm so proud of myself. :) First let me say that I'm not one to take time off of work. I don't. I was a competitive swimmer for 18 years, dedication and hard work are key. Sick days, injuries, pain, or complaining aren't part of the game. And this disease made that SO difficult. I would swim through awful stomach cramps, really terrible endo pain, injuries, illness. It was necessary, and I was ok with that. But there were some times that I just couldn't do it, so I'd have to take a week off here and there- and it was like torture. Definitely not my style.

I've been on an intermittent unpaid medical leave for four weeks! FOUR WEEKS! That's insane. I never would allow myself to do something so drastic. But I couldn't go to work. I just couldn't do it. Every time I went over a speed bump in my car, every walk from the parking lot to the office, every stabbing pain that would hit me in the middle of a phone call. I couldn't pull myself to go. If it was absolutely necessary I would go into work for a single meeting and then get out of there fast. Well, yesterday, I went into work just to go to work! I sat there for three hours, did my job, chatted with my coworkers. It felt really good, like I almost had a life back. Then today I went to three meetings in a row, stayed at work for five hours before deciding to come home! I actually feel accomplished for this, which is so sad in so many ways; but baby steps.

The pain is starting to feel more generalized now, like my abdomen is sore, fragile really. That's a big difference from the sharp stabbing pains I was having consistently over the last four weeks. I'd like to say that the pain in my right ovary is going away, because the cyst ruptured a week and a half ago- so it should be going away. But I still feel some weird pain down in my lower right abdomen. And that awful nagging pain in my diaphragm haunts me. Just when I think it's getting better, I have to briskly walk for a couple of minutes and it's right back beating the crap out of me. Hard to believe, but it's an improvement.

I know this blog sounds like it's just a bunch of complaining, I feel like I need to explain what's going on- what the pain is, where it is, how it feels. It helps me in a lot of ways to write it down first off, but I also want this blog to be educational for others who are dealing with what I'm dealing with. If other people can relate, or have similar pain, maybe this will help them. Just knowing there are others out there feeling what they're feeling, it makes such a huge difference. And maybe there's someone out there trying to find answers, never been diagnosed, wondering what they're dealing with. I hope this helps some :)

On a much lighter and happier note though, the endo diet is going superbly! I've already met new friends through this blog who are helping me with the diet. Such amazing suggestions and support, I love the Internet :) I went to Safeway last night and found wheat and dairy free everything, it was unbelievable. I mean, Newman-O's?? Ben actually likes them better than Oreo's and they're wheat/dairy free and all organic! That Newman has a gift. TJ's has Organic Food Bars that have no soy, dairy, gluten...nothin but sweet sweet goodness. The chocolate chip flavor is a must-try. TJ's also has wheat and gluten free Brown Rice fruit juice sweetened bread. Do it!

My problem is that I'm not a cooker just yet. Still learning. I can make a delicious rice spaghetti with turkey tomato sauce that blows even myself away! And some turkey taco salad that's really good. Beyond that it's a mystery to me. So a) I really need food that's quick and easy and b) I really need to learn to cook. I've gotten some great tips that I'm so excited to try out, and I will absolutely let y'all know what else I find.

I also started taking fish oil pills, B-12, calcium, magnesium, and zinc everyday. My dad's been trying to get me to take vitamins for 15 years and I just never seem to do it. But with this most recent endometriosis kick in the ass, I'm on the vitamin bandwagon! I'll do anything. Crazy what this disease will do to someone. In any case, these changes can't do anything but help me. I need all the help I can get with the damage the endo and thyroid problems are doing to my body.

I'm still waiting for a call on Lupron, still taking Yaz continuously in the meantime. Has anyone else out there taken Lupron who would discourage or recommend? Just getting more feedback for myself. I, of course, will make the decision for myself. But it's never bad to have more information!

I'm going to watch Friends on TV...I still love this show.

Computer in the Kitchen

I'm not at work again, instead I'm sitting at the computer in Ben's kitchen. That makes me laugh at least, sitting on a huge office chair in the middle of a tiny kitchen, staring at a computer screen that takes up one of only three real countertops available. Especially because Ben has a whole "dining room" sitting empty right beside me, but the man refuses to buy a table. He feels a dining room table is illogical. He wants a desk. But does not actually get a desk. And so, the computer is in the kitchen. Laughs, always laughs! I love that man!

Last night I decided I might try to make it into work this afternoon! The pain was a bit better last night, and I made a commanding decision that I'm not doing myself any good by waiting! So I'm going to try to make it to work to actually sit at my desk, take some phone calls, and champ out. I know, I'm awesome. You don't have to tell me. I impress myself everyday. Ha. It's the small victories, y'all know that.

I'm still waiting for the call on the Lupron. I know they said three weeks possibly, but I never thought it would really take that long. So I'm still hoping I'll get a call this week or something. We'll see.

Most important point of today's post- Ben and I went grocery shopping last night for the Endo Diet! I've never really tried to do any sort of food changes to help all of this, except for cutting out dairy because, well, I'm lactose intolerant and I just should. But I went wheat/gluten free last night at the store. And I'm cutting back on red meat! And I'm gonna go ahead and try to eat pretty organic from here on out too. And...drumroll...I'm gonna cut back on sugar. Probably. haha! TJ's is the absolute best store ever, Ben hadn't ever been there before he met me. He's a lucky man nowadays. ;) I spent over $100 but I think it was really worth it. I'm going to get better; Lupron, diet, surgery, whatever. Bring on the silver lining!

So it's time for me to take a shower. That's right, a shower! And focus on it not hurting as badly as yesterday. (I still have some cramping, upset stomach, sharp pains in my lower right abdomen- right ovary, and that pesky rib pain! The worst is that I KNOW that it gets worse when I move around more, hence the three weeks without working. But three weeks is long enough. Goodness!)

After I start working a little more, I'll build up with that, then I'm going to start walking again. Baby steps! And eventually I want to hit the gym again sometime soon, because from what I've read, exercise has really helped some with the Lupron. I'm just hoping I don't get the massive headaches. I've never suffered from headaches, and I don't know how I would handle that. :( But, it's all in the battle.

Not the Best Monday

I was really hoping to wake up to a new feeling this morning, make it into work at least for part of the day, and start to turn a new leaf. There's always tomorrow!

I did, however, stop bleeding this weekend after three weeks! That was a rough three weeks for sure. Not the first time I've gone that long, and I'm trying new BC so I'm guessing that's what the problem was. They switched me to a new BC about a week ago after I had bled for two straight weeks on my last one (first time trying it). And the new one is stronger, so that should work. They really want me to go continuously rather than what I was having to do (mainly regular birth control schedule because if I tried to skip a period I would be doomed for a month of bleeding rather than a week). We'll see how this works until the Lupron injection. Still waiting on that call. C'mon insurance!

I did get a call from Dr.RH's office today, but it was only to report that I need to see an endocrinologist because of my thyroid blood test. My antibodies are high! No way! ;) haha, I know I know- why don't I have an endocrinologist already? Well I saw a few of them and the last one I saw did the biopsy of the masses on my thyroid at the end of 2007, and then with the amazing news that it didn't look like cancer, he sent me away- said come back in a year for a check up to make sure it's still not cancer. He didn't want to treat the Hashimoto's at all. So I got fed up and quit endocrinologists. Yes, I'm a quitter. If I don't have cancer then I'm good to go? I mean, I'm much MUCH better off than the alternative, but then why did I start seeing a bunch of doctors in the first place. It's not like I woke up one morning, thought to myself "Amy, it feels like you might have cancer, you'd better go get that checked out." And then found that, alas, my intuition was wrong. It's along my merry way again!

No, I had symptoms, irritating unexplained symptoms. And no one wanted to deal with them if they weren't due to cancer. So I quit. I figured, if they were ok with me quitting, then I was ok with me quitting.


Ok, in all seriousness I did get fed up with the cancer scares and the driving all over the state of Arizona, filling out new paperwork, faxing old medical records to doctor upon doctor. I stopped thinking about a possibility for any real change, for anything to help the symptoms go away. I was relieved I didn't have cancer, and I was done fighting. So I stopped worrying. Now it's time to get back up and take my health into my own hands again. I'm tired. I'm sore. I'm having that nagging lump in my throat feeling more and more. I think it's time to get my thyroid under control, and find someone who wants to help me! So I got a couple of referrals. And I got a referral for a Reproductive Endocrinologist as well, because the nurse said it's never a bad idea to get a jump start on my fertility awareness. I've got countless things working against me here, I should at least be on my own side working for me! :) So it's back to the drawing board, more faxing and driving. But at least I won't be sitting on my butt all day waiting for something to happen.

Weekend's Almost Over.

Sunday night is never my favorite, thinking of the week to come. But for the past three weeks I haven't made it to work for more than a few hours a week. So it's a strange feeling Sunday nights nowadays. Always a fight, should I try to go in? Will I just have to leave? Will I break down and make a fool of myself? Will I be in pain?

The cyst ruptured last Monday evening, and my wonderful boyfriend had to carry me into his apartment for a mad rush of vicodin to mask the all-too-familiar pain. I stopped going to the ER for the ruptures a while ago, it's a bite down and bear it situation now. It had been a while since I had one rupture and I knew this one was coming, so it made it better that I was prepared with vicodin on hand and Ben knew what to do. I hate that he has to deal with that.

But the aftermath of the cyst rupturing is a rough thing, it's just so uncomfortable. Mine was hemorrhagic this time, so it's blood in my abdomen I'm fighting now. That makes it a little more inflamed, and quite a bit more irritating. Speed bumps, sitting down too hard, sometimes even walking feels like I'm paying for it. I'm just waiting for it to re-absorb into my body now, and I think it's on its way.

Friday night Ben and I went and had some sushi for dinner, and woke up Saturday morning feeling like I took a kick in the gut from a horse. Saturday night we went to my parent's annual wine tasting party, where I let the alcohol act as my vicodin for the evening. Never a bad idea in my book.

After about twelve bottles of water I woke up sans hangover this morning, but still feeling like I needed to track down that horse and give him a piece of my mind. But over the course of today it's gotten a little better. I think this week will be better.

I'm still waiting for a call from Dr. RH, unfortunately. She told me she definitely wouldn't make me wait for her over the weekend, so I'm a little disappointed. This isn't the first time I've decided to believe a doctor, to only be disappointed. But I'll hold out and give it a second chance. I need a doctor out in AZ! No more phone appointments with the surgeon as my main appointments. I think it's important to see someone in person.

I'm still waiting also for word on the Lupron. They said it can take three weeks for the insurance to approve it so I can get started. I'll be taking the add-back therapy also, especially because I have some bone trouble already and a slight calcium deficiency. Gotta be careful!

A Long Road to...now.

I thought that was the worst of everything, that one night being totally embarrassed at a restaurant and feeling like a wuss. I thought the rushed pelvic exams in front of swim coaches and the crying in an ER waiting room would be the worst. And then the endometriosis actually showed itself. I had five more cysts rupture in the next four years. One while I was actually swimming. I could hardly get out of the pool. I switched birth controls about every 4 months trying to find one that would Actually stop my bleeding. I would get awful cramping in my pelvis when I tried to swim (which was twice a day most days), and the back and leg pain was contributed to herniated discs, but we think now that the endo probably exacerbated it. Finally, when I decided that I would retire from swimming and try to move on with my life, we looked into actually doing something about this "endo". I sought help from specialists at the Stanford Medical Center to no avail. But through the grace of God, a teammate's father was the head of anesthesiology at Stanford Hospital and knew Dr. N, a very busy and world renown endo surgeon. He saw me right away and agreed to do surgery within the month. That was June 2005, two weeks before my college graduation. The lap showed stage 4, with adhesions nearly closing off both ureters, and covering almost every organ in my abdomen. Half of my right ovary was removed due to cyst involvement, but both fallopian tubes were functional. The surgery took some time to recover from, and I had to stay in the hospital for an extra couple of days due to problems with my bladder function from the ureter involvement. But after about 6 weeks I was doing pretty well. I started immediately on another course of BC after refusing the Lupron (those side effects sound horrifying). After about 3 months I started to feel like I could live again. I didn't have another cyst rupture for a year and a half, and the pain was minimal for almost that whole time. After that, it started to creep back into my life again.

About 8 months after my surgery I started swimming again recreationally, and then about 3 months later decided to swim full time to try for the 2008 Olympics. It was May 2006. I was almost done with my Masters degree and couldn't wait to put my all into training. Once the cyst ruptured after my surgery, things started falling apart. I moved back to Arizona to focus on training, but I would get the pelvic cramping if I really tried to push myself during swim practice. The breakthrough bleeding got more persistent. I was managing it all pretty well until about December 2006. I started feeling constantly fatigued. I couldn't make it through an entire practice anymore. My muscles would shake, I would fall asleep eating, I was always thirsty. I decided that enough was enough and I finally went to see someone about it. My PCP thought I might have diabetes and sent me in for a myriad of blood tests. Nothing came back positive, this was not the first time that's happened- as those of you with chronic illnesses surely understand. So I kept pushing, thinking I was nuts, and of course feeling like a wuss. When I injured my back again at a swim meet in March of 2007, the thought of trying to swim through all of this again was too much. I gave up the dream of the Olympic games and started focusing on figuring out what was wrong with me.

An extensive thyroid panel showed elevated anti-thyroglobulin antibodies. Normal thyroid panels don't test for this, only TSH and T3/T4 levels. My antibody level was high, which means my body was attacking my thyroid. For some reason, my thyroid hormone levels were showing as normal, so my body was fighting everything off, but I found out that with the antibodies comes the diagnosis of Hashimoto's disease. Don't you love the sound of that?

Hashimoto's disease is a roller coaster of thyroid activity. It starts out with the antibodies increasing, then once they attack, the thyroid over activates causing hyperthyroidism. Then the thyroid slows down causing hypothyroidism. This swing can go on for any amount of time, sometimes a lifetime. But in most cases, the body kills the thyroid which will cause hypothyroidism. This can be treated with drugs, replacing the hormones the thyroid normally produces. Not an exact science though, and the drugs can cause serious swings in hormone levels. But until my hormones show a constant hypothyroid, they won't treat it. For now, I just swing back and forth. From cold and tired, gaining intense amounts of weight one month, to hot, jittery, hyper, and dropping weight unaided the next. At least it was nice to know this was happening instead of feeling confused. But still nothing I could do about my present situation. About a month later they wanted to do a routine ultrasound of my thyroid to make sure it wasn't enlarged. They found two masses that were suspicious which sent me into more tests and a biopsy of my thyroid. Luckily, I got the all-clear, just wait and see. That was December 2007.

In April 2008 I got a promotion at work, and all I could think of was how scared I was that I would have to miss work because of my pain. The abdominal pain was getting worse, and it made me tired and left me feeling at times emotionally unstable. I wasn't going to be able to be in my new position if I was staying home from work in pain, or crying because I was uncomfortable. I decided to go back to Dr. N in California to see what he thought about having another surgery. He agreed that it seemed the endo had come back and another surgery could help. I was excited to feel better again.

I had the surgery at the beginning of July 2008 in California and flew back to Arizona five days later. I had stage 4 endo again, but not as bad as the first lap showed. Only one of my fallopian tubes works now, but they cleared everything out and felt confident about my chances of reproduction for the future. Two weeks later I was back at work and doing pretty well. About 5 weeks later I started really moving around again and getting some light exercise. The first day of my first period after the surgery I ended up in the ER with severe chest pain, pain up under my rib cage on the right side that radiated to my shoulder. It was a lot like the gas pain after the surgeries, but sharper under my rib cage. All of the tests came back negative, CT scan, ultrasound- everything looked fine. They sent me home. The chest pain went from about an 8 to a 4 over the next three weeks until it shot back up to about a 6-7 a month later. All of this time I had not been taking any BC. I wanted a break from the constant bleeding. I thought if I just went natural for a while it would do my body good. That was my biggest mistake. The chest pain dropped back down to a 3-4 about a week later and then I started getting a very uncomfortable full feeling in my abdomen. I had sharp pain all over the right side of my lower abdomen. A few days after that feeling started I got a UTI that wouldn't go away with antibiotics. A CT scan revealed a 5cm cyst in my right ovary and possible kidney stones. I started on BC right away to avoid any growth if it was an endometrioma. An ultrasound a week later showed a 6 cm hemorrhagic cyst, and we decided to wait a few weeks to see if it would absorb or (probably) rupture. 19 days later it ruptured. That was a week ago.

This whole time I've been in correspondence with Dr. N's fellows at Stanford via telephone and they've been very helpful. They think that the chest pain is diaphragmatic endo and want me to keep up with the BC to try to get through it. But I needed a doctor out in Arizona I could work with more closely. So I started going to some GYN's out here a few weeks ago and I think I've found one- Dr. RH. She, unfortunately wants me to start Lupron, but was very patient with me and understanding of my symptoms and the emotional turmoil of all of this. She spent a long time talking to me and assured she would call me with more information once all of my charts from my previous docs and Dr. N come in. She also thinks the chest pain is diaphragmatic endo and thinks the Lupron will help.

Now it's the Lupron discussion. What a controversy! I've had doctors telling me to try it for five years now and I have always said an enthusiastic "Are you out of your mind?!" I've read all I need to read about the side effects, not a chance! It wasn't until this diaphragm pain came along that I've actually considered it. Dr. RH feels that burning off endo on the diaphragm is far too dangerous, although Dr. N has done it and wrote a paper on it. But either way, I couldn't get more surgery so close to my last one. So it's either BC or Lupron. And BC just hasn't passed the test.

So I'm deciding to go ahead with the Lupron, side effects and all, in hopes of getting this chest pain to subside at least enough to go to work and exercise. I haven't been to work in three weeks- just what I was afraid of. And sitting around waiting to get better is doing nothing but make me feel depressed and alone. It's time I do something about it, at least mentally I'll know I'm trying and can maybe get up and move around a little.

The long road until now has been taxing, but I'm optimistic about my chances of living a happy life (not pain free, not normal, but HAPPY). I'm surrounded by supportive people. My family has always been a source for encouragement and an advocate for progress for me and my well-being. They support me and love me unconditionally, and I question how they do it all the time! And my boyfriend is absolutely unbelievable. Who would have thought that a man could bring me so much happiness in the midst of such anguish? He's my light. I feel blessed to have so much love, I've been blessed since the day I was born. I know there's a plan for me, and while I know I should just give in and let it happen, I get so confused sometimes. Hashimoto's and Endo both cause infertility. Why would God let me want to be a mother so badly and then let all of this come, too? But I guess it's the tests and the trials that make the blessings such...well, blessings. :)

So here it all starts. I'll keep you updated on the process of starting the Lupron, the side effects, the next steps, and everything I'm feeling with all of it. If anyone out there has any experiences like mine, please reach out. I really hate feeling alone in these diseases.

Starting Line

It's partially because I need to write all of this down, it's partially because I want others to understand, but mostly it's because I need to feel like I might be able to help someone else. I've read a few blogs from women who are dealing with endometriosis and other chronic illnesses and found myself nearly in tears at just the thought that I am not alone. I know it's cliche, but the loneliness, the alienation, it's almost the worst part.

I hope that someone reads this blog and has some ideas as to what to ask they're doctor next time they visit. Or maybe someone will read who has symptoms like mine but has never found a diagnosis. Possibly someone will read and find comfort knowing they can get through it, too. Maybe I will find a friend, and maybe I will find some answers. In any case, it couldn't hurt. So here I write.

I was 19 when I finally started asking questions about my pain. At nineteen I finally described the horrible periods, the massive bleeding, the awful pain, the unending nausea that had been going on every month since I was 14 years old. Mainly it was all started at 18 by a ruptured ovarian cyst that happened at a swim meet my freshman year in college. I was travelling with my team, we had just finished a meet in SoCal and headed to a team dinner from one of our sponsors. I noticed sharp pain that radiated down through my pelvis, horrible pressure, and stabbing pains throughout my abdomen. I had to rush to the bathroom to seek solace to cry, to figure out what was wrong with me. I was embarrassed. When a teammate found me on the floor of the bathroom, they carried me out and took me to the UCLA hospital. I waited in pain for 6 hours. They did emergency pelvic exams, CT scans, ultrasounds, nearly took my appendix out. Finally they found free floating fluid in my abdomen. Luckily, my mother was at the swim meet and could rush to the ER to find me. She explained her past, and a temporary diagnosis was found. My mother had an 11cm ovarian cyst rupture about twenty years earlier. The surgery they did after it ruptured diagnosed stage 4 endometriosis. The genetic ties for this disease are strong and once the GYN heard that, she was set on my diagnosis of a ruptured ovarian cyst. No laparoscopy to get an initial answer, but of course nothing definitive could be determined without one. So shortly after, at 19, I was prescribed continuous birth control to give my reproductive system a rest. I thought I was finally saved. I was young, and naive.