Chronic Illness - What I Learned And What You Need to Know, Medicinally and Mentally

My journey began when I was five months pregnant. One night my husband found me curled in the bedroom, frantically scratching my back, legs and arms. Everything felt like it was on fire and nothing would relieve the pain or the angry red welts that covered my body. A quick call to the doctor began a series of blood tests that revealed nothing unusual. After a thorough check of mine and the baby's vital signs, the doctors and I concluded that my body was simply reacting to the changes brought on by pregnancy. Seven years later, it is clear that something more was wrong with my body.

I suffer from chronic hives, also known as Chronic Urticaria. At random times, on any given day, a portion of my body will burn, itch and begin to swell into angry red welts. It could be my face, my back, my legs, my arms or my hands. It can be painful as my skin darkens and swells into unsightly bumpy red patches and often frightens people who insist I immediately rush to the emergency room for a dose of epinephrine, fearing I could collapse at any moment.

What is known about my illness is that my immune system is on constant red alert, seeking out toxins that have entered my bloodstream. What remains unknown is what caused my immune system to reach red alert status and what my body considers toxic. It is the fear of what may be lurking under the unsightly and slightly uncomfortable welts on my body that keeps me awake at night and keeps me searching for answers to the mystery when my doctors have assured me that nothing serious is wrong.

Seven years of an overactive immune system is taking its toll on my body. I am more fatigued than I should be, some days finding it difficult to drag my tired body from bed or feeling as if my sleep lasted eight minutes rather eight hours. I am sick more often than I have ever been and my hives are appearing more frequently than usual. I am thirty-five and yet, I often feel twenty years older.

Fed up with being sick and tired and angry at the lack of answers from my medical team, I have stepped up to fight for a diagnosis and a cure and perhaps help the millions of others who suffer right along with me in their own chronic, yet difficult to diagnose, illnesses.

Things I have learned and you need to know……

1. Conduct your own research. While it is important to trust your medical team, it is vital that you conduct your own research separate and apart from the medical institutions. Doctors are humans, make mistakes and are just as capable of "in the box" thinking as anyone else. Often if they find a pill to alleviate the symptoms, they stop looking for the ultimate cause. In truth, you may never be free unless you fix the problem.

In my case, the doctors simply prescribe antihistamines to keep my immune system under control. Occasionally it works, most of the time it doesn't. It was my own research that revealed chronic hives is typically the symptom of one of four underlying conditions including an underlying chronic bacterial infection, an autoimmune disorder such as lupus, an allergic reaction to foods, or an early symptom of certain types of cancers such as Hodgkin's Disease. Each of these, left untreated can cause serious future repercussions on my body.

1. Talk to your doctor. Patients should always discuss their research findings with their doctor. A doctor can be a useful ally in finding the appropriate tests and/or treatments. In any situation, it helps to have a second pair of eyes looking at the problem and searching for an answer.

2. Advocate for yourself. Patients are often their own worst enemies when it comes to advocating medical issues. It is perfectly understandable to be intimidated in this world of medical jargon, complex issues and vast amounts of education. However, doctors consistently say that they appreciate a patient that can effectively advocate for his or her health. We, as patients, have to overcome the inferiority complex that keeps us silent. Doctors can be, and often are, wrong. Patients MUST speak up and even question something that does not sound correct. I promise; a doctor will not mind if his/her patient points them in a direction to which they were previously unaware. If you are suffering symptoms that seem to have no connection, talk to your doctor. They will listen. If they don't listen or do mind, find a new doctor! Generally, doctors want to help you find the answers and fix what ails you.

3. Listen to and trust your body. Little is known about how or why people suddenly develop an autoimmune reaction to the heat, the cold, to touch, or to sunlight. It may be as simple as harboring a latent bacterial infection that could have been easily treated if the infection was known at onset. Our bodies are a complex machine and something does not just go wrong over night without an explanation. If you aren't feeling well or right, see a doctor. If the diagnosis seems out of sync or to vague, search for an answer. Remember, only you know if your body is not performing properly.

4. Harness but beware of the awesome power of the internet. Before the Internet, researching medical issues was much more difficult. People often had to accept their doctor's word without access to extensive medical libraries or having a medical degree. Today, with the click of a few keys, patients can now bring years of research and information gathering into their home. But that power does not come without risks. While there are useful and good tools on the Internet, there is also a great deal of misinformation. Everything you research on the Internet should be taken as it is; an interesting possibility that could prove to be false or erroneous but followed up with your physician.

Hopefully, as we pursue these new ideas, I will stumble upon a simple cause and an equally simple cure for my chronic condition. But whatever the case, I will know that I have done my best to overcome my fear and to fully participate in my healthcare and recovery. I no longer look to my doctor for the answer. Instead I look at him through the lens of maturity and understand that he and I will work together to keep me healthy and strong. I am less cautious about reading thick medical reports and more cautious of simply believing what I am told. I now keep a journal of my symptoms and any treatment I try, including the results of the treatment. I also have an ever expanding file of new places to look if we exhaust current illnesses. This gives me something to take back to my doctor and prevents the frustration so many doctors face at not fully understanding the extent of the problem and will hopefully lead both me and my doctor on the path to my recovery.