Monday, January 26, 2009

On Becoming Sick...

After fighting for control of so much in my life, I never thought I would lose this much of it. It has humbled me and taught me a lot; I am still learning.

I am writing this for several reasons- to get out my anger, frustration, and pain- to update those who haven't seen me in a while and have some questions- and to help my loved ones understand some of the decisions I've made.

I suppose it all started when I thought I had finally "had it all". After 9 years of working several jobs, raising my son, and going to school when I had the time, I had reached my goal of getting my Bachelor's Degree. I taught Middle School Art for a year before realizing that all the bureaucracy of a school setting just wasn't for me.

At the end of that school year, I resigned, got a cushy job as a mural artist and faux finish painter. The love of my life returned from the Middle East and we started dating. My ex-husband and I (with the help of his now-wife, Hannah) were finally coming to terms with the fact that joint custody was the best thing for our son all along. I felt great. I can't remember feeling better in my life!

That fall, my hips and knees started hurting, but I didn't think much of it- I was climbing up and down huge scaffolding all day long, on most days, and loving every minute of it. By Spring, the painting gigs were slowing down, so I reluctantly picked up a second job waitressing 3-4 nights a week (I told myself that once I got my degree I would never have to roll silverware again!) when Quent was at his dad's. Ben and I had also quit smoking and were working out on a regular basis.

Soon, my elbows would get sore during workouts and I started wearing knee braces on both knees to the restaurant at night because they had gotten so bad. By late Spring, the pain had spread to my wrists, fingers, and toes. Finally, one night in May, I had to leave work because I couldn't hold my waitress book open. I went home crying, Ben drew me a bath, and convinced me to finally see a doctor.

I had somehow managed to keep health insurance throughout my adult life- that is, until I got my Dream Job as a Painter. I would have to use my own money. Throughout that summer, I had to quit both of my jobs due to the pain in all of my joints. I drained my small savings account to see a few different doctors. I ended up selling most of my belongings in a garage sale and moving from a two-bedroom townhouse to a studio apartment. The doctors did some tests, but could not come up with a diagnosis. so they started trying me on different medicines. This was the beginning of a long, ,long road of "trial medicines".

By the end of summer, they had me on some stuff that made me tired and mentally unstable- or maybe it was the illness- and I had to, for the first time in my life, admit to myself that I didn't feel capable of raising my own child. You cannot know this heartache unless you have one of your own, but it is something I will never wish on my worst enemy. After years of custody battles with my ex-husband, I knew I had to face him and ask him for help. I had to tell him that I couldn't do it anymore- that I felt in my soul, that it was NOT in Quentin's best interest to be with me at this point.

I chose to speak with his wife first because she is a great mediator and a kind soul. And I know that Quentin loves her and that she loves him and I couldn't be more grateful to have a step-mom like her in his life. We met at a coffee shop and talked about options and discussed logistics and she was very understanding and patient with me- I know that I must have been a mess. I left crying but knowing that Quentin was going to be in good hands. I cried the whole way home because I could not be those good hands. And that killed me.

In fact, I believe I spent most of that late summer and early fall crying due to all sorts of things- the pain, the meds, the "not being a mom" feeling. The truth was starting to hit me though; it was only getting worse. I had run out of money and the little bit my family could help out with was gone. The last med change left me crying for 6 days straight. I'm not kidding- if I was awake, I was crying- snot rags and all! Poor Ben didn't know what to do with me anymore, so he called one of my sisters in St. Louis, Hannah (it's a great name!). She drove to Indy and brought me back to my hometown of St. Louis where my mom and sisters presently live.

They got me set up at a hospital here that has a free clinic program and really great financial assistance. Initially I was staying at my sister's house and Ben was still in Indy. We soon realized that doctor's move as slow as politicians! Ben and Chad and Hannah and I worked things out during the Holidays and I amazingly got to spend s lot of time with Quent here in St. Louis. Unfortunately, that's probably when I was at my sickest. I have more symptoms than just the joint pain, but I won't get into them here.

Ben and I ended up getting an apartment here in St. Louis and it is close to my sisters and my mom. They help me out a lot with so much and I couldn't possibly thank them enough! During most of 2008, I battled severe depression stemming from the fact that I didn't feel like I was being a mom anymore. Chad and his wife, Hannah, have been more than flexible about getting Quent here to visit and letting me stay there to visit at times, so I see him when I can. But in the traditional sense, that you always think of when you are growing up, I was not a traditional mom.

Unfortunately, the doctors here are no closer to diagnosing me than the ones in Indy. They say that illnesses like this can take years to diagnose, so I'm not really sure what that means for my case. They have said that it is most likely not the big three that you think of- Lupus, Rheumatoid Arthritis, or Fibromyalgia. And at different times, different docs have told me that it probably is a couple of those- or maybe something else. They are really vague and that is frustrating. But all I can do is keep going to my appointments, taking my medicine, and trying different things for the pain.

Although I love St. Louis, I hope to get back to Indianapolis soon because that is where my child is, but I need to feel safe enough and strong enough to live without the support that I have needed for the past couple years. I need a diagnosis and I need to heal.

I didn't know that it would all come out like this. It is a long story and if you have made it all the way down to the end, I wish I had a prize for you reading all of this! I think I just needed to tell the story. From my side and what I've been going through so you all can understand a little bit better. For those of you that have helped along the way - even just a phone call of support- it has meant the world to me and I cherish every bit of love from you all! Thank you for hearing this.

**Update: Apparently, Ben was not the love of my life, but one of a select few I've had along the way.  We broke up in October of 2009, and quit speaking to each other in April of 2010 for reasons too deep to discuss on a blog.  I wish him well and I wish him peace.**

No comments:

Post a Comment