(We interrupt our regularly scheduled Tuesdays With Tyler in honor of Invisible Illness Awareness Week. For the rest of the week, as much as I can, I hope to concentrate on comforting those who are first experiencing illness, those who continue to live a life in chronic pain and with chronic illness, and educating those who do not know about what it is like to live with an Invisible Illness. (That’s where the Awareness part comes in!))
The theme for this year’s Invisible Illness Awareness Week is “Take a Breath”. What do you do when you are told by a doctor that you have Ehlers-Danlos Syndrome? Even worse, what do you do when you know you are sick and every doctor in the world is telling you you aren’t?
There are a lot of scenarios. What do you do when you start collecting Invisible Illnesses like one would collect stamps?
Having 15 different diagnoses and conditions, I have chosen to write about how I have dealt with being given diagnoses upon diagnoses. I have been fortunate that the longest I ever went without a diagnosis was for six months, before I was diagnosed with Rheumatoid Arthritis in 2003. I do consider myself lucky that I have very little joint damage due to a proper diagnoses and the medicines available to me and others like me in this day and age.
I thought Rheumatoid Arthritis was the worst disease I would ever get. I cried and cried. I wondered about my future, would I ever be able to have the children my new husband and I dreamed of? How was I going to manage work with this excruciating pain, how would I ever be able to work out again at the gym, when I couldn’t even walk without pain?
Slowly, my life changed and I was forced to accept it because what other choice did I have? I lived to work, meaning, if I wasn’t working, I pretty much was resting, napping or sleeping until I had to go back to work. When I went on business trips I had to take ice packs with me so that I could use them on my break, in the morning or at night to ice down my swollen feet. It was not uncommon for me to throw up in the morning and then get ready to go to work. I look back on those years and I wonder, “How the Hell did I DO that?”
There is no real answer to that question. I did it because I HAD TO. Grant and I s’ marriage was a partnership but I was the main breadwinner, so there just was no choice other than to keep on going. Nights were the worse. I surfed the internet, I watched mindless television like Newlyweds: Nick and Jessica, anything to distract me from the pain; even though I was on narcotics, the pain was still breaking through. Eventually I came upon the website But You Don’t Look Sick, run by Christine Miserandino, whom I truly believe I owe my life to.
To write about all 15 diseases I have would take a book. There is one disease that I dreaded, the one that if I thought I got, I would NEVER be able to deal with it. I was warned that having Rheumatoid Arthritis, I could “cross over into” that disease at any time.
It happened a year after I had my son. I was working in a new job and in October of 2007 I felt the pain and swelling increasing. On Thanksgiving, not having any medication because I had felt okay without it, I was ashamed to admit that I stopped at a liquor store in an effort to get some relief from the pain, or I could not make it through Thanksgiving. Eventually I saw my Primary Care Doctor who, God bless him, gave me Percocet.
I was taking 8 Percocet a day just to get through my work day. I had problems with a co-worker stealing my drugs. Very few people knew what I was going through at work because I knew that my company’s environment was not “disability friendly”. I was falling asleep driving to and from work. It is with God’s grace that I never hurt or killed myself or anyone else.
In March of 2008 I was laid off from my job. It was the start of the economy having a meltdown. Last hired, first laid off. They never knew how sick I was. As angry as I was about the situation, I looked upon it as a blessing. I was probably just a tired working mom, trying to do it all. I would collect unemployment and take a couple of months just to rest and relax and then I would get better.
Instead I just kept getting sicker, by the day.
I had a Rheumatologist who did not believe I was in the pain I said I was in. My blood work was saying “Normal”. I fired this doctor. I found a new Rheumatologist who was recommended to me by my primary doctor. I would have to wait two-and-a-half months to see her, but at that point I had realized that any doctor with a waiting list that long had to be good.
In June of 2008 I had my appointment with her. She spent an hour with me. She listened to me. She examined me all over. She believed me. She told me about a company out in California who works exclusively with the blood work of people with Auto Immune Diseases and suspected Auto Immune Diseases. I asked her what she thought I had and she said, “Oh, I’m not even going to guess until I see the whole picture.” As frustrating as it was to hear that, I knew that I had finally found MY Rheumatologist.
And then, there is was, in black and white, as they say. LUPUS. My type, my titer, my pattern, everything. I had the disease that I had feared the most: LUPUS.
I remember going to the message boards of ButYouDontLookSick.com. At that time I was one of the Moderators of the boards and posting in the Lupus forum. My topic was, “I Didn’t Want to Have to Post Here.” I didn’t want to be in that forum, I did not want to tell my fucking Lupus story! I remember someone replying back to me, “None of us want to be here.”
No one wants to have Lupus.
With a one-and-a-half-year-old, how would I deal with it? I couldn’t cry, I couldn’t mourn, my baby needed me.
I was never able to go back to work after my Lupus diagnosis. It was the old straw that broke my chronically ill back you could say.
I was forced to take a breath. I had to. I was a mother, I was a wife. I could no longer work, but I still had those jobs.
My will to live is very strong, I know that now. I will do whatever it takes, take what ever medication and treatments are needed to keep going. I want to live, at least until my son is a grown-up, I don’ think that is too unreasonable a request. I will take the joys that life offers me, along with the pain.
I will keep going.
I will keep breathing.