The Monkey Wrench

I recently have been dealing with a new monkey wrench that has been thrown into my life.  While I am glad to have an answers, it is also annoying in a way because it is just another seemingly long road to travel down.  When searching around the Internet looking for information on this new monkey wrench in my life, I came across a blog that really hit home for me.  Check it out:

http://www.hormonesmatter.com/coming-out-of-the-disease-closet-the-challenges-of-chronic-illness/

While not about my specific illness, it addressed the issue felt by many people living with chronic illnesses.  The blog called for people to come out of the disease closet and share their experiences.  I think that it makes a very valid point that illness is something that should be discussed, whether it be for support, information, or knowing that other people struggle with the same issues.  So, I am coming out of the disease closet.  I'm done not talking about it.  Here is my story.

For those of you who don't know, I have been struggling with my health for about the last ten years.  It is a long story, but let's just say it has been an up and down journey.  I have been lucky to experience periods of some good health, in which I will go go go in order to take advantage of life in the fullest.  However, those have been joined by many periods of sickness.  When you have a sinus infection that won't go away or have trouble breathing, you can be quite miserable, but you truck on because you become used to it.  I always wondered why I got sick so easily.  I seemed to always catch every cold or flu that came my way.  Those colds and flus would linger longer than anyone else and then morph into sinus infections and asthma/allergy issues that would require steroids and antibiotics to overcome.  I am allergic to pretty much everything, and asthma aggregated by those allergies is also a companion of mine.  I am on pretty much every inhaler, nasal spray, pill, nasal wash, shots, and even a biological medicine for my allergies and asthma.  I like to joke that I am a walking pharmacy.  Yet, despite all of these medications, I still find myself struggling.  In the past few years, I have endured a couple of sinus surgeries as well.  After my last sinus surgery this year, I am still having problems with sinus infections that won't go away.  I have spent most of the year on antibiotics.  I am tired of drugs, especially steroids, which, to those of you who are not familiar with them, have some nasty side effects including uncontrolled weight gain, mood swings, and insomnia among many other things.

While some of my friends and family know what has been going on with me the last few years, many do not.  For some reason, when people have a health problem, they tend to want to keep it a secret.  It is almost as if it is a shameful thing.  It can be particularly hard when your outward appearance does not show your chronic illnesses.  I don't want to deal with people telling me "well, you don't look sick."  That is the absolute worst thing you could say to someone with chronic illness.  Just because someone doesn't look sick, it doesn't meant that they are not sick.  I have always not liked to talk about what is going on with me too much, but I think I want to change that.  I'm finding that it is important to not be afraid of oneself, and I am finding that it is not healthy to not talk about illness.  I didn't choose this, and I most certainly did not want this.  However, this is the hand I have been dealt and I will make the most of it.

I was recently diagnosed with a primary immunodeficiency disease known as Specific Antibody Deficiency (SAD).  The road to this diagnosis has been difficult and long because my deficiency has apparently always manifested itself through my allergies and asthma.  I am familiar with the experience of having a chronic illness.  I have always had allergies and asthma throughout my life, but, in my late teens, my health in this arena took a turn for the worse.  I kept adding more and more drugs to my daily routine to stay as healthy as possible.  Basically speaking, our immune system has immunoglobulins that play a big role in protecting us against infection.  People who have SAD can mostly produce normal immunoglobulin levels, but lack ability to produce some against types of organisms that cause upper and lower respiratory infections.  The result?  Massive amounts of sinus and respiratory infections.  My having allergies and asthma only aggravates this problem.  The treatment for this condition is usually what is called IVIG, or Ig replacement therapy.  I am currently in the process of seeing if my insurance company will approve this treatment, as it is very expensive.  While I know that it is not completely guaranteed to help, I have a lot of hope that it will.  I am looking forward to a better quality of life.  Most of all, I am thankful.  I am thankful that I have answers, that I can look forward to better health, and, most of all, that I have a wonderful set of people around me.  I couldn't have asked God for anything better in this life.