DON'T TAKE YOUR HEALTH FOR GRANTED

DON’T TAKE YOUR HEALTH FOR GRANTED…BELIEVE ME, I KNOW.

The past 2+ months have been a bit of a roller coaster ride for both Mike and I. The last full day we had on St. John was September 3, 2012. That morning we went for our final family hike on St. John and when we reached the topped of Caneel Hill, I noticed a welt the size of a half dollar on my inner thigh.

As the day progressed the welt grew and by early evening it was about the size of a softball and started moving down my leg. I was scared (especially because I heard horrible stories about the Brown Recluse a very poisonous spider on St. John) so I went to Myrah Keating, the medical clinic on St. John.

The doctor said it was “nothing to worry about” and he prescribed me some medication and steroids. All was fine and dandy for the next week (while I was on the meds)…but then ALL HELL BROKE LOOSE. I woke up in the middle of the night with horrible chest pains, then I fell back to sleep for a couple of hours and woke up with a half swollen tongue. Afraid that my throat would close up I went to a walk in ER clinic and was given a shot of steroids and told that I “would be fine.” That day my tongue swelling went down. However, more horrible welts started appearing all over.

DON'T TAKE YOUR HEALTH FOR GRANTED
Hive/welt in the morning

DON'T TAKE YOUR HEALTH FOR GRANTED

Early Evening Progression

DON'T TAKE YOUR HEALTH FOR GRANTED
Same hive/welt that evening!

Over 23 days, I had visited 8 different doctors (including one trip to South Nassau Emergency Room) and had been given 5 different diagnoses (including Lyme Disease and Cutaneous Larva Migrans – both of which were INCORRECT).

The last doctor I went to was an allergist, Dr. Annette Fiorillo-Quinn. She was absolutely amazing. She diagnosed my condition as Acute Urticaria and Angioedema. Basically all the fancy name means is that I am allergic to something UNKNOWN. Dr. Fiorillo took me as a walk in and literally spent over an hour going over my medical history. She was caring and knowledgeable. She provided me with her cell phone number and told me to call her whenever I needed, which I took advantage of a lot. She called in medicine for me several times and returned my phone calls within the hour. I am so thankful that we found her, a doctor who actually cared.

DON'T TAKE YOUR HEALTH FOR GRANTED

At South Nassau Hospital ER Room – In good spirits

DON'T TAKE YOUR HEALTH FOR GRANTED

60 days later and the welts continue to make new appearances. I still do not know what is causing them, however I am on medication to try to keep them under control. Unfortunately, about once every week I have a major outbreak.  The allergy has gone from Acute to Chronic since the hives have lasted more than 6 weeks. When the hives are at their worst they hurt to the touch, like someone is beating me and when angioedema kicks in my eyes, tongue, face, hands swell up. It is super scary!

DON'T TAKE YOUR HEALTH FOR GRANTED

DON'T TAKE YOUR HEALTH FOR GRANTED

Mickey Mouse even made an appearance!

What I find so ironic though, is that a week before Mike and I left St. John, we were on a hike and I said  “we are really blessed for our great health,” and then I stopped and knocked on a tree (I am a little superstitious). Since we have been in such great health, Mike and I decided we would not need health insurance while we were visiting family and friends in the states. I wish I could go back in time and change that decision. As you could imagine we have spent $$$$ on doctor and hospital bills as well as prescriptions.

To this day I have not missed working in the corporate world, but I do miss health insurance! Luckily, we have health insurance internationally, and I am looking forward to going to Australia and seeing if a doctor there can help me! In the meantime I have more then enough meds to keep my hives in a controlled manner and I have an Epi Pen in case of an emergency.

DON'T TAKE YOUR HEALTH FOR GRANTED

A welt starts growing under my eye (about 9pm at night)

DON'T TAKE YOUR HEALTH FOR GRANTED

The next morning I wake up and my face looks like this… me at my worst!

The worst part of being sick while home was not being able to do and see everything/everyone we had originally planned. We missed Rosh Hashana and Yom Kippur family dinners, a weekend with the Schweitzer’s, Winery Day with the parents and more. I had no energy to do anything, all I did was sleep and lie around. However, I am grateful that we were able to go to Virginia, see my sis, Jeremy and the kids and also babysit for a full week while they went on vacation.

I want to thank Mike for being my backbone during the entire shenanigans. He has done so much for me while I have been sick (including but not limited to driving me everywhere, running to several different pharmacies in search of correct medication, bringing my feces to the lab – [ewww I know] and so much more). Thank you Mikey! I also want to thank my parents and Nancy, as well as all other friends and family who have been so supportive. I really appreciate it and love you all so much.

Speaking of friends and family, many of you have expressed your concern with me traveling while having this unknown allergy. Have no fear, I will be okay! I talked to my allergist and she said traveling is fine. I can’t let this allergy run my life. I have read many message boards and there are people who live with hives/welts for 5 years and never figure out the cause.

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****UPDATE****

In a few months (September 2014) it will be 2 years since I have had these hives. Unfortunately, I still do have them and sadly I have no answer to what is causing them. There have been many ups and downs and even after seeing doctors in Australia and New Zealand as well as all over the US… no one can figure out what is going on with my body. I did have a tons of blood work done in Australia and everything came back normal.

In February 2013 I was able to taper off the steroids and the hives finally disappeared, sadly a few months later (August 2013) the hives came back with a vengeance. When the hives first appeared in September 2012 I was put on steroids and it was absolutely miserable. 6 months of these “life saving pills” were literally ruining my life, I was depressed and overweight and I hated myself. So when the hives came back in August 2013, I told Mike that I was not about to go back on steroids and if my tongue swelled up or throat closed up then I would accept my fate.

DON'T TAKE YOUR HEALTH FOR GRANTED

I went 3 weeks not taking any steroids and I was in excruciating pain. It felt as if someone were beating me with a bat constantly. My feet swelled up so bad I couldn’t walk (Mike had to carry me to the bathroom), my hands swelled so big I couldn’t bend my fingers, my right eye swelled shut and then the inevitable happened… my tongue swelled up. It was absolutely devastating and I didn’t know what to do. Lilly (my best friend from Australia) recommended going to see a Naturopath. Since I was willing to do or see anyone, I made an appointment. The Naturopath ran some tests and gave me 2 herbs to take along with many different kinds of vitamins. Low and behold… THE HERBS WORKED! 4 days after walking out of the Naturopath I was hive free. The Naturopath has no idea how or why it is working, so no questions have been answered but I am no longer in pain and the hives are under control!

Of course the US does not make these herbs so I have them shipped from Australia. These herbs are literally saving my life. Unfortunately the down side to it is that I can’t have babies while on the herbs… but without the herbs my body turns into a monster. So for now I am just grateful that I have these herbs. I know my body better than I ever have and if I start feeling ill I need to just relax and let my body have time to do its thing.

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****2nd UPDATE – October 2014****

Here I am, more than 2 years since I was diagnosed with Idiopathic Urticaria and Angioedema and I still have no answers. In the beginning of August 2014 I went to see my allergist and she suggested that I try to narrow down which herb (I was on two, Allergeze and Lymphatox) was working for me. I took a gamble and stopped taking Allergeze, 3 weeks later shit hit the fan (worse than ever).

DON'T TAKE YOUR HEALTH FOR GRANTED - Hives_Face,Back_update

Let me just state that I am not putting these photos up here so you feel bad or sorry for me. I am making them available to the public in order to help others that are battling the same or similar condition. For about 2 weeks, I was absolutely miserable and of course went back on prednisone. It was horrible, but the pain I was in was unbearable. I was getting pressure hives and when I went to bed I had to decide whether I wanted the left or right side of my face, and left or right hip (or butt), to be swollen when I woke up. It was seriously miserable and so painful. I went and saw the allergist again and her response was “Alisa, this is just like any other disease. If you had diabetes, you would take medicine to control it so you need to take medicine to control this.” That made me more angry than anything. I literally had $3,500 in blood tests run and everything came back normal, so for her to say I have a disease… but then can’t tell me what the disease is, is mind boggling. And yes, if I had diabetes or any other diagnosable disease then I would understand, but you can’t tell me that you don’t know what is wrong with me and then tell me I have to live on drugs. NO – not an answer. That moment changed my life. I decided that this had to be caused by something… most likely by something I was eating.

I did tons of research and narrowed it down to several different options – maybe I was gluten intolerant, or had Leaky Gut or was High Histamine intolerant.  It’s been 2 months and I have stayed away from Gluten, Dairy, High histamine foods, Processed Sugars and foods that contribute to leaky gut. For the month of October I have juiced almost every morning, trying to get as many nutrients into me as possible.

Two days ago I did introduce some dairy and high histamine food into my life and unfortunately I am having some new hives.  I am going to have to take a step back and cut out high histamine foods and dairy, at least for a little bit (that delicious cheese is going to be hard to resist after reintroducing it) and try to narrow down and figure out if it was the cheese or something else.

It is quite amazing though. I have been off Prednisone for 3 weeks and I am taking supplements and eating healthy and the hives are pretty much gone.  I have lost 15lbs which is pretty amazing and I am pain free. I hope to eventually get to the bottom of this all but I am sure, more now than ever, that eating so unhealthy my whole life has really contributed or completely caused these hives. My body is trying to tell me something so instead of masking it with drugs I am listening this time.

If you know anyone else who is battling with hives, I would love to help them through it.