My struggle with my rare diseases
Hi, I have had Cold urticaria since I was a teenager, it got progressively worse when I had my son in 2003. Since then I have also developed cholinergic urticaria where I react and break out with heat or exercise. so haveing cold urticaria and cholinergic urticaria I find it very difficult regulating my body temperature to prevent cold urticaria when I get to cold or cholinergic urticaria when I get to hot. Due to these rare diseases there are so many things I can no longer do without endangering my life. With Cold urticaria I can’t swim, get caught in the rain, be In air conditioning where I can’t do something to warm myself up, I can’t touch anything cold, or have cold showers when it’s hot to cool down, or eat cold things like ice, I have to have warmed iv fluids and the list goes on. Cholinergic urticaria I can’t do anything physical that will increases my body temperature, so no exercise or hot baths and I have to keep myself cool on hot days. Due to these diseases I have shocking fatigue and every day is a constant struggle. I also have pressure urticaria but only mild at this stage. I also have a rare neurological condition called Misophonia where my brain interprets normal every day sounds as fearsome that triggers fight, flight and freeze response in my brain this is also a daily struggle. A lot of everyday things that most people take for granted I can’t do
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