Finding Out That I Have Graves' Disease & What Proceeded After

Have you ever had that feeling in your gut that something may be wrong with you? You can feel a change within yourself and how you feel but because you know you're a hypochondriac, you convince yourself that you're just crazy & try your best to push those suspicions aside, even though the obvious signs are right there?! Well, that's exactly what I did. Now because of that, I almost died. I could've died. I could be dead right now. At least that's what I found out when I finally did go in to an actual doctor after my family, more specifically my mother, forced me to go. They said my blood pressure was 200/40 and that I was going into what they called a thyroid storm, which can be very life-threatening and most likely the result of the Graves Disease they suspected I had, going untreated for so long. They said if I had waited to be seen even just a few months longer, I would've been dead. To think, I would've never found the true happiness and purpose in life that I now have if I would've kept ignoring the signs, or not listened to my family, I would've missed out on so much.
It all started I'd say in the summer to the winter of 2008, I could feel my heart constantly racing, even when just sitting for periods of time. I remember always asking everyone to feel my heart just to see if I was imagining things. They always agreed but by the time Christmas came, it was bad. I was making cookies with my mom and sisters, sitting there and my heart literally pounding, going so quickly, and I remember then asking if they thought my heart felt off. They agreed it definitely didn't feel normal, and I'd say that was probably one of the first times I was told to go to the doctor. Big mistake, because I didn't. Some months went by, my heart still constantly racing, having pains I couldn't even understand or explain in words at the time, starting to become super-sensitive to light and was also losing a lot of weight in short periods of time, yet still not going to the doctor. Fortunately, and unfortunately there were some other changes, big ones appeared that more people started taking notice to. Apparently my eyes were beginning to protrude (bulge out), yet I never seemed to realize it and because Jeff saw me every day, he didn't seem to notice it either. I remember in the spring of 2009 getting picked up by my mother and sisters to go to a baby shower, after not seeing them since Christmas. Immediately, my family it seemed were in a state of shock. My sister, Erica, literally started crying right then and had to look away because it was so hard to look at me. We sat there for a moment, and then proceeded to the party but then after my family confronted me, urging me, pleading with me to please go to the doctor. A few days after my mother called to let me know she had made me an appointment and wanted to take me which brings me back to where I had left off, at that first initial doctors visit. From that point, the doctor urged my mother to rush me to the emergency room. The doctors and nurses there also suspected Graves' Disease. They ran more tests, got me on medicine to try to lower my blood pressure & heart rate. The tests came back & it was conclusive, it was Graves’. After finding out I had this illness that will apparently affect me for the rest of my life, I knew I had to find a doctor since no doctor would see me without insurance they said, and fortunately found out I could be seen by an ophthalmologist & endocrinologist at the area’s best local hospital which is also used for learning purposes. From then on, I went to all of my appointments and started getting frequent blood tests as my health continued to worsen. My right eye started turning inwards which eventually led to my now constant double vision (of 3+ years now), my heart was still racing & blood pressure high, my eyes were super-sensitive to light & were also continuing to bulge out more, I was still losing a lot of weight, was tired all day but seemed to take forever to fall asleep at night, & my blood tests were constantly up and down they said, not to mentions the pain & lots of other fun stuff. The steroids, iodine, nor did any dosage change in my medicines seem to help. It was just really rough & each day brought new challenges. So, finally in December 2009 although my heart was still having complications & even after having a mild heart attack just days before while at my pre-op resulting in having to get an angiogram and stay in the hospital until, my doctors were forced to do a full thyroidectomy (they said it could get worse whichever direction we chose to go). During surgery, they accidentally damaged my parathyroid glands so now I have issues with my calcium and vitamin D levels getting low. Matter of fact, right after surgery, my calcium levels were pretty low, and even though I knew something didn’t feel right, a few days after my surgery, I was released from the hospital. Well, literally the next day the doctors advised Jeff to rush me back to the hospital after me having severe tingling going through my whole body up to my mouth area which is really dangerous they said. At the hospital, the doctors got me in immediately & said my calcium levels were dangerously low. I was hooked up to an IV and had to stay another night & day until my calcium levels were safe & where they should be. I even had to get up and walk around to prove I was well enough to leave. After that, my body recovered and I continued to be seen by multiple doctors. Some, but not all, of the swelling around my eyes was gone but there were still more surgeries needed to try to get rid of any more. So in June 2010, they performed an orbital decompression surgery on my right eye, which helped with some more of the swelling. Then the following month, in July, they performed the decompression surgery on my left eye. That one was a bit harder on me. Since my right eye was the one turned inwards and also the one I had the most trouble seeing out of, and then that I had just had surgery on it one month prior, patching over my left eye after the next surgery was done only added more headache & it was pretty rough for a while but with time comes healing, and so I did.
Over the next couple years, my levels would be stable, then up and down again. The double vision got worse, my doctors said it, along with other symptoms, made it so rough that I couldn’t work or drive anymore which was really hard for me to accept so the depression I had experienced for majority of my life so far due to several traumatic, life-altering experiences, got worse. It seemed like everything was being taken from me. Now it took me awhile but fortunately, after what seems like a miracle to me after a chance meet and greet (will talk about in a future blog), I no longer see things in that sense. I look at everything I have and have been through as a blessing & I feel fortunate. At least I get to see twice the beauty of this crazy, yet amazing adventure we call life. Some can’t see at all, or aren’t even here to, what’s some migraines, dizziness, pain etc. compared to that?! At least I’m here and alive to bear that pain...so I don’t feel sorry for myself anymore nor do I let anything get to me too much. Funny how it took me getting sick to realize that but hey, better late than never! Now I can enjoy my life and just try to occupy my time when I feel well enough to while waiting for my remaining surgeries, with trying to help others and raise more awareness for this disease that so many of us have, yet so little actually know about. Before I was diagnosed, I’d never even heard of it or anything like it, and really never even gave it a thought. That’s why I’m trying so hard to help make a difference and hopefully help entice others into getting tested.
Now on October 9th of last year, a great doctor from Children’s Hospital, after months if not a year or so of planning & getting everything in order, performed my first of what they said will be many, eye muscle surgery on both my eyes at once. It was also rough on me. Apparently I woke up during the procedure from what they tell me, trying to fight off the anesthesia and they accidentally scratched my cornea on my right eye and then after took a long time for me to wake up. After that, my right eye had to be patched over, and I had to see the doctor later that day after I rested, then again was seen about every 2-3 days after that. I was still recovering as I should be over the next few months and was able to get out of bed about 3 weeks after surgery because of all the pain and dizziness I was experiencing. It was really hard for me but my doctor said it would take some time each surgery for my brain to get used to seeing like this, and all the changes. I still had the constant double vision but the object doubled wasn’t as far to the right as it used to be, if that makes any sense. They recently, like earlier this month, performed my second eye muscle surgery. This time the surgery went a lot smoother, and seemed to have less of a recovery time. I still have the constant double vision, as I should, and my brain is again getting used to the changes. The double is just now in a newer spot, as it seems with each surgery, the double is just getting closer to the original so I'm optimistically hoping that the surgeries are working. I saw my eye doctor again a few weeks after the surgery, and will see him soon to see how things are coming along. He did say, however, that it will require at least one to two more muscle surgeries just to correct the double vision if they even can, not to mention the surgeries after that but that’s down the road. The next eye muscle surgery is planned for late this summer. So now I’m just enjoying what I can of each day until it comes, and planning our Graves Disease & Thyroid Awareness Ride & Party. Lord knows I have a lot of patience! Why spend my days worrying, I'm happy now and have to much to look forward to! :)
I hope what you can take from this is to please learn from my mistakes, don't ignore your instincts. If you think something may be wrong with you, even if it turns out you're fine, please don't hesitate to be seen by a doctor. I can't help but feel that if maybe I had gone into a doctor much earlier I never would've gotten the eye bulging, or the double vision, all the pains and muscle weakness and other fun stuff I have been experiencing, not to mention, I may even still have my thyroid. So please, I urge you, GET TESTED FOR GRAVES/THYROID-RELATED DISEASES IF YOU HAVEN'T ALREADY, it may even save your life!!! Thanks so much & have a great day! ~God Bless :))