Sunday, July 17, 2011

Life as a 'sick' Mommy

For as long as I can remember I wanted to be a mom. I baby sat all the time as a teen, worked as a preschool teacher, worked in a children's resale shop... all because I love kids.

In April 2002 Jordan was born. I was a Mommy. If you are a parent, you know it's not an easy job. Being a sick parents makes it even harder. For as long as I can remember I've had pain and was easily fatigued. It was just something I learned to deal with. I remember being exhausted when J was a baby but I figured that was normal. The pain in my pelvic area was chalked up to my c-section. So, I just went on with life.

In September 2004 Matthew was born. Shortly after that Jordan started having her issues. Between having a newborn/infant and a toddler who was in pain, I kinda forgot about my pain. Right before Matthew turned a year things changed. I remember getting awful headaches, worse than what I was having before. My pelvic pain became almost unbearable. I was bouncing from doc to doc trying to find an answer. Being brushed off and told I was fine, that I needed to see a shrink or given different anti depressants.

In October 2008 I was given the name of a doc who would do a hysterectomy (at the age of 34) seeing how I thought 95% of my pain was caused by my uterus. Turns out I was right, kinda. I had adenomyosis, and my right ovary was covered with cysts. About a year later I found out that I also had interstitial cystitis. The causes of my pelvic pain was solved but the rest of me hurt too. More than I had originally thought.

After years of chronic pain I found a doc who sent me to a rheumatologist. Brilliant idea seeing how I have a daughter, a sister and a first cousin all with autoimmune diseases. At my first appointment with the rheumy I started meds. We didn't know what we were dealing with but he knew it was an autoimmune connective tissue disease. Turns out I have a few...

I was officially diagnosed with lupus, sero negative RA, fibromyalgia, Raynaud's, antiphospholipid syndrome and a few others. All of those are autoimmune. My immune system is jacked up and instead of attacking bacteria and the bad stuff, it's attacking healthy tissue. Which causes pain.

Being a mom with all these diseases is hard. I'm taking several medications, including low dose chemotherapy, and they leave me tired. As if the diseases themselves aren't enough to deal with there are side effects from every med I take. Because most days I feel like poop, it leaves me feeling like a bad mom. I can't be in the sun, I can't handle the heat, too much walking/standing hurts. So yeah, our summer has pretty much sucked.

I started Remicade a month ago and I've had 2 infusions. I'd like to think it's working but I really don't know. I've had a lot of pain the last 2 weeks. So bad that I almost had Rick take me to the ER in the middle of the night. Problem is, even if I went, there isn't anything they can do for me. I already have pain meds, muscle relaxers and steroids at home. I don't want to be looked at as a drug seeker because I'm not. I just want to manage my pain better so I can do stuff with my kids.

I didn't ask to be sick and I don't like being sick. I don't like my house being a mess all the time because I can't find the energy to clean on a day where my pain is minimal. For the last month my pain has been about 6. 8 or 9 a few times and a 4 on a GOOD day. My kids saw me sobbing in the shower because I hurt so bad and I couldn't "suck it up" anymore. I had taken all the pain meds that I safely could, yet thought about taking more in hopes that it would ease the pain enough so I could sleep. I cried myself to sleep with Rick by my side only to wake up less than 60 minutes later crying again.

And I'm not alone. There are millions of women just like me, trying to be a good mom and wife that live in constant pain. Don't forget, I have Jordan who has her own issues. We run from appointment to appointment and it's exhausting. I have a hard time knowing that she will probably be facing the same issues I do someday. Of course, I hope I'm wrong but reality is she has a chronic autoimmune disease too. It can flare just as bad as mine has at any time. I just pray it doesn't.

Thursday, July 14, 2011

A message from Jordan

"I have an invisible disease but my pain is really, real."

School starts in a little over a month and I'll go in and talk to her class like I've done before. But how do you get a bunch of 4th graders to really understand? Jordan misses a lot of school. Between her infusions, PT, eye exams and being sick her classmates think they can catch what she has. They don't believe her when she says she hurts. So, what to do??

Jordan's next infusion in less then 2 weeks. I'm bringing the camera and recording bits and pieces again. I'm going to put together another video  of her day at the clinic sans the Linkin Park soundtrack ; )  I don't want her to go through another year of being called a liar or kids being afraid to play with her because they might catch arthritis.

Of course I'll let the staff see the video before I go in but I think it's important to show these kids that yes, she's different but she's not going to hurt them. Her missed days aren't fun. In fact, they suck.