Hiking with Hives

So I’m just going to say it. I have chronic urticaria.

Since I was diagnosed shortly after my eighteenth birthday, I have been very self-conscious about it and have hidden it as much as I could. For years, I’ve pretended I didn’t have it. Tried to will it away, avoided situations where I knew I would probably have a reaction, and disparaged when it came during social situations with no explanation.

It’s an autoimmune disorder where my body thinks something is wrong and produces histamines to inform the body. Basically my body is like “oh, shit!” and produces hives pretty much daily with varying degrees and it’s been going on for almost a decade.

The most frustrating part about it is that after seeing many doctors and specialists, the best they can give me is that statistically it tends to disappear one day (though if it lasts more than five years you’ll probably have it forever) and all they can do is continually pump me with medications to try and control it.

Starting college with daily uncontrollable hives sucked. The medications did not work and made my hives even more unpredictable as well as tended to raise them into welts instead of just red blemishes. I didn’t know why my body had suddenly gone out of control and along with it my emotions. When my body is weak, my hives get worse, and my mood dips as a side effect. Depression and anxiety are major consequences of chronic urticaria – which are two things I’ve never felt I had. I was hitting lows for the first time in my life.

Within a year, I dropped all medication and began to try and find my own solution. I scoured online message boards but that wasn’t much help because every case is so different. Part of the problem with this disease is everyone’s story is unique. And we all just want answers.

I read up more and more on nutrition, on health, on being better to my body. Sometimes the studies make me a little crazy (there’s chemicals in pretty much everything) and often I feel hopeless because I add one more non-solution to the list, but then I had a revelation.

I couldn’t hold myself back anymore.

It’s not my fault that the cold, the heat, the stress, the whatever has given me a reaction. I have to accept it’s going to happen, and be more open about it. It might be hard to understand, but at the end of the day the one who most cared about it was me. Starting to share my disease this year has been hard but I’ve learned no one is going to fault me for something out of my control.

So I’m starting 2018 with a public proclamation in hopes that I can be more open about my disease. I’ve passed up on too much in fear of appearing like a monster. But I want to get outdoors. I want to experience life. My urticaria wants me to be at a perfect homeostasis at all times, but that’s just impossible. If I’m not sweating a little, playing in the snow, or just generally doing all the things I want to try, I’m letting it win.

So there it is. A lot of my new experiences in the past year have caused my skin to react. Many trips I took in 2017 I had to deal with itchy, uncomfortable hives that threatened to bring down my mood. Major reactions happened in Whitesands, Chickasaw, Belize, and LA. But I can’t let it stop me. I want to be open about this and start fully embracing the way it is.

I have chronic urticaria and that’s life.

6 thoughts on “Hiking with Hives

  1. After a year of working on my hives and trial and error, eventually I was put on a monthly Xolair shot. My hives if bad enough would cause anaphylaxis. Eventually the Xolair would completely control them and i would be able to live a relatively normal life. Mine sadly wasn’t just hives, but swelling also. My eyes would swell shut, and I would have swollen lips, feet, hands, etc. It’s so hard having them and not knowing what is the cause. My heart breaks for you having to suffer through this. Know though, that you’re not alone in this fight. And there is hope at the end of the tunnel.

    Liked by 1 person

  2. As a physician, I often wonder whether providing a diagnosis does more harm than good. A diagnosis simply puts a name to an “end result” (we like to call a “disease.”) An “end result” is more appropriate because the “condition” is often the result of multiple factors causing our systems to lose balance in function. Autoimmune can be the culmination in this process.

    Rather than viewing this as a disease without solution, I would suggest you analyze your comprehensive lifestyle (not to place blame, but rather determine the factors that may be causing this condition to express itself.)

    Using this comprehensive approach can take, weeks, months or even years to reverse or “tone down” the frequency and intensity of this condition. Naturally, in some cases resolution never occurs. This, however, doesn’t mean your overall health (both physical and emotional) can’t show improvement during this process.

    Since I’m not your physician, the following ideas are simply CONCEPTS (not treatment recommendations.) Balancing one’s health can be extremely confusing. Food, exercise, hydration, stress reduction and stress channeling, appropriate quality sleep, nervous system function, social lifestyle, job career satisfaction, family and social interactions and a spiritual relationship (for those wanting and/or needing a relationship with God) are components that result in optimal health when balanced appropriately. For each of us, achieving this balance is UNIQUE.

    You have obviously done your own research. Finding professionals that can help “fine tune” your research might be an asset for you. Learn to address these various components SLOWLY over time not to overwhelm yourself. Do NOT seek a solution that resolves UTICARIA in itself, but rather a solution that restores proper BALANCE to your entire system. Uticaria is simply the manifestation of an imbalance typically resulting from something “in excess,” something “deficient” or some combination of BOTH. Discovering these imbalances requires TIME and PATIENCE. Frustration only adds to the imbalance by causing emotional duress and physiological stress (hormonal stress) on the body.

    The more you learn (and look forward to learning) the better the chances for success. Learning helps the individual gain more CONTROL over their body improving confidence and overall health outcomes. Focusing on Uticaria and its diagnosis is self limiting and causes distraction from fixing the “BIGGER PICTURE,” namely ANY imbalance that exists. Enjoy the experience of personal GROWTH by discovering a path in life that RESULTS in QUALITY improvements. Life is dynamic which means ongoing adjustments throughout life are necessary to MAINTAIN optimal balance.

    If you have any questions, feel free to contact me. My information is NEVER attached to any fee structure or compensation. I simply want to see people live the quality of life they choose to live as long as they are diligent and willing to place the necessary effort into accomplishing this.

    Wishing you much success on whatever path you choose.

    Liked by 2 people

  3. This was an amazing post. I know it is hard living with a chronic illness but you have so much strength and positivity in you! I hope blogging makes dealing with the illness easier. You should be able to be honest and open about what you struggle with and not feel any kind of shame! I wish you health and happiness for 2018. Also, thank you for liking my post “Essentials for Chronic Illness”. I hope that more of my posts will be helpful to you and I look forward to reading more of yours! Take care and stay strong!!!!

    Liked by 2 people

  4. Girrrrrl I needed this. I started having physical reactions to everything a few years ago, and was diagnosed with an autoimmune disease as well. I have been on a constant quest for perfection through my diet and lifestyle (I refuse to take medication) to fix the reactions, but at the end of the day it makes things worse because of the stress is causes. I know a handful of my triggers, and avoid them. Running and sweating cause hives and rashes for me a lot lately, but life is meant to be lived!! I don’t shy away from sharing my experiences, in fact sometimes I probably share them too often, but I admire your courage to let go.

    Liked by 1 person

  5. I love this post!!! I have chronic urticaria too and I don’t know anyone my age who has it 😥 it has been really hard over the years and I can completely sympathise with you. My skin when it’s bad can look identical to yours in the photos! Antihistamines (prescribed by the GP) have changed my life and help me manage the symptoms. I hope you start feeling better soon 🌟 I write a lot about my struggles with it and it’s lovely to know we are not alone xx

    Liked by 1 person

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