I'm here sharing my journey navigating the wild waters of the medical field, trying to get an accurate diagnosis and find my way back to my full, healthy life. It's an ongoing story and this isn't the first time I have had to navigate these waters. My first foray was back in October 2007 and lasted until July 2009. A very different reason and experience than the journey I am on now. I will get to that one in a different post, but for now I want to share what started me on this path I am currently on. Please keep in my mind I am adult and I use adult, aka salty language regularly. This will be a long a post, so hang in there while I set the stage and remember, they call it practicing medicine for a reason..
The last three years have been what I refer to as my "medical mystery tour". It all started in May of 2014 when I started taking some hormones to help regulate my monthly cycle and heavy bleeding I was having. Those hormones caused me to as my doctor said, 'throw a blood clot' ten days after starting to take them. At that point I needed to go on a blood thinner, had already suffered heavy blood loss and was still bleeding heavily. Needless to say it was a whirlwind of doctor visits, ultra sounds and some unknowns. Further tests showed I not only had a pollup on my cervix but I also had fibroids. Since I was still bleeding so heavily, my internist and OB/gyn determined that an ablation was the best option to stop the bleeding and allow me to get back on the blood thinner as soon as possible. Tests showed my hematocrit was at 12 and my doctors were surprised I could get out of bed, let alone go to work and still teach yoga. Looking back I think I was fortunate that I didn't realize just how sick I was, but the sobering fact that I could have died had that clot moved became apparent in the doctors office after the ultra sound confirmed the spot in my lower left leg was a massive clot. I thought it was muscular and was massaging it and I had managed to shove further down my leg luckily. If it had moved in the other direction I would died to death. Looking square in the face of my mortality was pretty frightening and on the trip home I fell apart with how overwhelming it all was.
The surgery was a success, the bleeding stopped, I went back on the blood thinner and I figured everything would be fine in roughly 90 days if the meds worked as my internist described. He prescribed a drug, Xarelto and at the time the Universe was trying to give me the info that it wasn't the drug for me but I think I was too sick to pay attention. It was horribly expensive, my insurance company at the time said they would not cover the cost and I was faced with having to go a different path with the older method which is basically rat poison. My internist pulled some strings and got me enough samples that I could be covered for the 90 days he wanted to start with. Almost immediately I had a stomach ache and when I called my internist to tell him, he told me to take Zantc. The thing is, it wasn't acid reflux, it was an actual pain in my belly, every single day I was on that awful med. Time went on and 3 weeks into the med I noticed that my toes were numb and it was climbing up my feet to my ankles and from my fingers to my wrists. I luckily found a web site where other people were taking it that had a message posting service and learned that the bloating I was also feeling, strange muscle aches and pains and the numbness were not just me. I called my internist again to give him the update and the response was that he wanted to keep me on the med. I called three weeks later to inform him that I was now numb to both knees and my elbows and had horrible stomach bloating and pain every day. He still kept me on the med. I started learning more and seeing things about class action suits, brain bleeds, stomach bleeds, all things that scared the ever loving shit out of me while I was walking around as a hemophiliac. After 90 days I called and told him I was numb to both hips and both shoulders and that I would not be taking the meds for one more day. I was told to come in for an ultra sound to see what the status was of the blood clot.
The ultra sound showed the clot had shrunken in size and dropped down into my ankle and the tech informed me that at that point a common aspirin every day would most likely be the best treatment to clear it up. I walked back into the internists office and told him I wouldn't be taking any more Xarelto and how angry I was that he had not listened to me about the side effects I was having and I hoped that I didn't have any lasting damage because he refused to listen to me. At that point he admitted that I hadn't tolerated the drug from the beginning. No shit, REALLY... He put me on aspirin every day and I walked out the door and never went back. This was a hard space to navigate, this internist has been treating most of my family for over 25 years, saved my father's life, helped me with the first medical mystery tour I dealt with and now I was livid with how this all played out. He refused to take my reactions seriously, treated me like I didn't know my own body and neglected to observe that I was having a severe allergic reaction to a relatively new and untried med.
I chose to move on and do the work to get back my health, found a naturopath and started trying to rebuild my gut health in particular as well as my overall health due to blood loss and trauma. She started me on warm water with lemon every day and then switched me to lime water as she felt it was better. I was still having numbness in my limbs and I noticed that I started to have this red itchy rash, that started in small patches and over the following months spread like wildfire. Never having had hives before I didn't realize until months later that was what I was dealing with as the naturopath was prescribing expensive supplements and treatments to try to treat my numbness. I finally made it into a dermatologist who informed me that I had chronic urticaria of unknown origin, or chronic hives and they couldn't tell me why. When I asked if it could be the result of having a severe allergic reaction to the Xarelto, he hedged, telling me I was having an autoimmune response and there was no way to know why. He told me that it could be up to a year before they went away and one day I would wake up and they would be mostly gone. He prescribed Zyrtec everyday, starting with one a day and upping if the hives progressed to a maximum of 4-5 a day. Yes, you read that right 4-5, 24 hour Zyrtec a day. Here I was once again following what a physician was prescribing in the conventional medical arena in the hopes it would help me get my life back. This was April of 2015.
The hives continued to get worse and in a follow up with my new GP she said maybe it was time to see an allergist. At this point I was taking Zyrtec 4 times a day and had been on a couple of rounds of prednisone in the hopes it would quell the hives. The prednisone made it marginally better while I was taking it but once I tapered off the dosage they came back and usually worse. By this point not one of my doctors had spoken to me about food, other than to say it wasn't what I was eating or coming into contact with that was causing the hives, that my body was having an autoimmune response. I made it into an allergist about a month later, that was quick I learned. The only reason I made it into the dermatologist so quickly was that I had a friend who helped me out, most wait times for both allergy and dermatologists is 6 months at a minimum. Pretty scary when you are sick and have no idea why or what is causing it, I was lucky, well sort of.
The allergist was an older man who seemed to be relatively well informed and told me that it would be trial and error with multiple meds, upping the ante if the first round failed and if the second round failed it would be very expensive shots. By this time I was having serious cognitive function issues as my body was flooded with mast cells dying and creating massive amounts of histamine. I happened to type in chronic urticaria in google and the International Urticaria site came up with a histamine elimination diet. This was the beginning of learning about foods and histamine, foods that are naturally high in histamine (spinach) and foods that create histamine when they hit your system (papaya). I went on a brutal elimination diet, starting taking the new meds the allergist prescribed and two days later ended up in Urgent Care with my lower legs so swollen my feet turned blue and the on call doctor telling me I needed to be on a longer run of prednisone to try to get some relief. I called the allergist the next day and his response was to keep me on prednisone for an indefinite period of time until things calmed down. At that point none of the new meds he prescribed were doing anything and the attitude of just leaving me on prednisone was scary too. I decided to seek out another allergist and it was suggested I go to UW Medicine in the hopes that someone there would have more information. In the interim of finding a new allergist and getting in to see him, I had a weekly trip to Urgent Care for anaphylactic episodes and one where my blood pressure dropped so low I almost passed out. It was scary as hell.
At this point I am going to stop and will post again with the continuation. This all happened from June 2014 through early August 2015 and I still had no answers, was still fighting residual numbness, flooded with mast cells and histamine, loaded with inflammation and literally wanted to peel my skin off my body with a spoon if that meant the pain and itching would stop.
Stay tuned for the next installment of my Medical Mystery Tour.