If not, here's a brief recap:
The start of it all...At age 21, I had pulmonary embolisms (blood clots in my lungs) and was
later diagnosed with an incurable, rare kidney disease. It was treated,
disappeared, returned, treated, disappeared and then returned again all over a
span of 2 years. Then I met "Doc Hollywood", a young doctor who decided in 2001
that we should try something else and see if we could make the remissions last a
bit longer...and it has not returned since. 12 years in remission on a
prescription drug with virtually no side effects is truly a MIRACLE!
but it was just the beginning of a trail of health dots...
- Dot #1 - 10 years ago (at age 25), I got an ear infection that seemed to muffle my hearing. After ignoring it for years and suffering over 50% in hearing loss, I finally had a stapedectomy on both ears in 2009. My hearing was restored to 90%!!! Truly another MIRACLE
- Dot #2 - About 6 years ago, I got into "something" while working in the backyard and had some sort of allergic skin reaction. The doctor put me on some steroids and the grossness quickly cleared up. A year or so later, I noticed a colorless spot on my hand but soon there were other colorless spots. It reminded me of Michael Jackson's skin disease, officially named Vitiligo but still referred to as the "Michael Jackson's" at our house. A little google research led me to realize that this too (like my kidney disease) was an auto immune disease.
Things were beginning to sound all too familiar to me.
I was putting it all together through technical research sites and google and webMD (all very official, right?) but I had yet to have a doctor look at me and say this was all somehow related. Maybe it was because I was seeing a different type of specialist for each issue. Maybe it was because they weren't communicating. One doctor's "silver bullet" for connecting all of this was Lupus tests and those kept coming back negative so in their minds, I was just an incredibly unlucky healthy unhealthy person...and they were the experts, right?
Danny and I would half hearted joke that all of these things were connected and that I had some weirdy disease that had yet to be discovered and named, a disease that had no test and certainly no treatments, a disease so rare that we couldn't even find anyone in a similar situation. I say that our joking was only half hearted because deep down I think we both knew that this was bigger than me and maybe we were more right than wrong, which meant that much about our lives was unknown and uncertain and that's just uncomfortable.
So we carried on until another weird unlucky unhealthy thing showed up.
Dot #3 - The start of this diagnosis is a tad personal so I will quickly brush through it and get onto the real diagnosis. For some weird monthly happenings, I went immediately to an OB/GYN. Needless to say, I had been inconvenienced twice in a row and I was simply not having that. Seriously people, I might be going deaf and have weird spots on my skin but I am not putting off going to see the doctor when it comes to a certain few things and this was one of them. Once again, I just kind of went pot luck on the OB/GYN thing because I didn't have one and I wanted to get in ASAP so I just took the first doctor with the first availability. I did not care! As God would have it, just like my pulmonologist and my nephrologist and my ENT doctor, she would be just the doctor I needed to see at just the time I needed to see her.
So I showed up and signed in. The ran my vitals, which are always great...and I waited in that little room in that little gown for the OB/GYN to come in. We had a little chat about my history (of which most doctors are incredibly intrigued and baffled by), a little chat about my current issue and then she did the check-up. Her first thought was that I may be pregnant but she wanted to be sure. She left the room and I sat there panicking through all the scenarios.
(I can tell you right now that my heart sunk right into my stomach at just the mention of the possibility of being pregnant...and not in a good way. I have a future post in my head about this too and you will all understand better why a married woman,who loves being a mother would react this way.)
She came back in and did her test and sure enough, I was NOT pregnant (silent sigh of relief) and everything looked normal (another sigh of relief.) She stood up and looked at me again and said she wanted to watch me drink a glass of water...ummm, okay? I'm a very compliant patient and so I took the little dixie cup of water and drank while she watched. Instantly her eyes lit up with this sort of AHA kind of look. She asked me to do it again...so I did.
(Please note that I am an incredibly sarcastic and cynical person so all this time I am having to suppress the multitude of remarks, comments and jokes running rampantly through my head. Not an easy task.)
And then she gave me the unofficial official diagnosis. She would have to wait on official blood tests but she believed I was hypothyroid and presenting with a goiter, which she only noticed whenever I took the drink of water. She knew the water test only because she herself had been recently diagnosed as being hypothyroid and presenting with a goiter, which was really only visible when she took a drink of water. So she would order the right tests and send my case back to my primary physician, whom we quickly figured out that she happened to know and whose son was over at her house the night before. See, right doctor at the right time!
So I had the blood tests run and sure enough, I was indeed hypothyroid. As soon as I got the results over the phone and made the follow-up appointment with my primary physician, I went straight to my good old faithful google and webMD. I always want to enter the doctor's office informed. Because I was catching on, I didn't just search for hypothyroid disease. I searched for autoimmune hypothyroid diseases. I was hoping nothing would show up...but something did.
I went to my appointment with my primary physician. He ordered another thyroid panel and also a sonogram of my thyroid since there was an apparent goiter. He assured me that he felt like this was all fairly common, especially considering that my mom and my brother were both also hypothyroid. I asked him to run one more test though, the antibodies test for Hashimoto's Hypothyroidism. You see Hashimoto's Hypothyroidism is an auto immune disease where your immune system attacks your thyroid, making it inflamed (hello goiter) and eventually destroying it. Of course my awesome primary physician agreed to run the test, although he was pretty sure it was just plain ol' hypothyroidism.
Turns out it wasn't. The test for Hashimoto's came back positive. The sonogram of my thyroid proved I had a goiter. i wasn't surprised by the Hashimoto's but I was devastated by the goiter.
(Right here is where I must confess my ignorant perception of goiters. All of my goiter knowledge was based on a Seinfeld episode. If you aren't a Seinfeld fan, well you should be. In this particular episode, all the characters are volunteering to be "friends" with senior adults. Elaine is paired with a very interesting senior adult woman, who just happens to have a goiter on her neck that is the size of a small cat. When the doctor confirmed "goiter", that's what I pictured. Clearly, that is not reality.)
Unfortunately they also saw some "shadows" on it. You don't have to hang out with too many doctors to translate "shadows" as something of serious concern, cancer level concern. It certainly didn't help when the appointment secretary called to tell me to report to the cancer center of the hospital, even saying that going there didn't necessarily mean I HAD cancer, as if that was some grand consolation.
So, I did what I had done time and time again...I researched online. I researched the prognosis, treatment, survival rate and so on of thyroid cancer. I had resigned myself to the real possibility that I had thyroid cancer. I was prepared for the surgery and the chemo/radiation and even losing my hair. I approached all of it the same way I had approached all my other life or death health issues, completely calm and methodical, with the exception of losing my hair. Just the thought of it made me cry but I had even come to terms with that by the time of my appointment.
So Danny and I showed up for my appointment at the cancer center of the hospital. I was scheduled for a fine needle aspiration (aka - biopsy) of the shadow areas on my thyroid with the thyroid cancer expert. He wanted to meet with me first. We waited and waited and waited. When he finally walked in, he was visibly upset, something I think I have rarely seen in a doctor. I did what I do and asked why. He had just told a patient who had become a friend over all these years that the cancer was back...that it wasn't going away...that they were out of options. We expressed our sympathy and I said a silent prayer for this doctor and this patient. No sooner had I finished then he looked up and asked me for my history. I gave it and got the same response I always get...intrigued and baffled.
He looked at my neck and said, "Yep goiter. I can see it from here." (Certainly not helping my self-esteem.) He looked at my lab results and said, "Yep. Hashimoto's. Let's get started on this biopsy so we can see what else is going on."
I went into the procedure room and got all ready for the biopsy. It was such a minor procedure he let Danny come into the room with me. After just a few minutes, he walked in and set up the sonogram machine so he could more accurately pin point the areas of concern, the shadows. He moved the screen so we could see as well and began to explain what we were seeing. All of a sudden, he said, "You have got to be kidding me." To say there was an awkward silence would be an understatement.
"Let me explain. I see the shadow the technician saw that concerned them. It's a lymph node and a normal one at that. We don't need to do an aspiration. There are no tumors. Other than being enlarged, your thyroid is fine. I'm so sorry if this caused you any worry or concern. You'll be fine."
And with that, we walked out.
I still had Hashimoto's Hypothyroidism (and a goiter:) but it would all be easily treated with 1 pill a day and blood tests every 6 months or so. I could certainly handle that.
That, however, didn't stop my longing to figure this out...to put the pieces together.
I returned to my research and found a huge listing of autoimmune diseases, which just happened to include my kidney disease, my ear disease, my skin disease and, of course, my thyroid disease. The search also led me to a doctor who was doing research attempting to find the specific genetic location of all these seemingly unrelated diseases. I e-mailed him on a whim not expecting any sort of response. To my absolute shock, he responded the next day. We exchanged several e-mails. He was kind and compassionate and understanding. Frequently, he reinforced that his research led him to believe that I was an unfortunate combination of unlucky genetics and some unfortunate, non-specific, environmental triggers.
He said I could potentially qualify for the study if an immediate family member also had 4 or more unexplained autoimmune diseases and would agree to the study, which he reiterated would be a hard sale. The doctor was clear that the study would probably never actually benefit us or result in any sort of treatment or therapies for our generation. The study probably wouldn't even name this unnamed disease that seemed so pervasive and illusive. The study would be for the future. Our genes compiled with the genes of other subjects would hopefully provide some sort of answer key...and hopefully, someday, a cure or therapy or treatment.
He was right. It just never came together and so my genetics would not be included in his study...but he was the first one who looked at all that I told him and said, "Yes. There is something. These are related. We don't have all or any answers for you but we are searching."
It was just another reminder that God's hand was all over this from the google searches to the doctor choices to the e-mails to the treatments...
And that was enough.
It only took one more doctor and one more completely bizarre disease and one more dot for me to connect until I really saw the pattern, so hang in there.
ONE MORE DOT!
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