Kari’s Thoughts

So, I got some news from the rheumatologist today regarding treatment moving forward for my RA and lupus. To set the scene, for the last year, I’ve been taking several drugs–prednisone, hydroxycloroquine, and naproxen–to control the pain and inflammation, as well as the progress of the diseases. These drugs are fairly mild, and my doctor chose not to use stronger treatments because, at the time, I was planning on having a baby.

Fast forward two years.

Since giving birth in March, the pain throughout my body from the diseases has, at times, become unbearable.  I can barely move my shoulders and arms in the morning and it takes about an hour before I can walk without a limp.  Some mornings I can’t even lift Elliott out of her crib or hold her up to feed her. I have constant pain in my knees, elbow, head and neck, left ankle, left hand, and lower back. My chest and bronchial system are almost always congested and sore.  Sometimes I can’t fall asleep at night because I am in so much pain.

I’d think most people don’t realize how much pain I am in everyday….except for Homer, who hears about it nonstop. I choose not to talk about it to most people because I don’t want people to think I’m a complainer or appear like I’m looking for sympathy.

There is a drug that has been proven effective in fixing the pain and drastically slowly the progress of the diseases–methotrexate. This drug has also been proven to cause birth defects in unborn babies, which is why I wasn’t on it before.  There are other biochemical drugs that have proven to work (and so far have proven to be safer)–Enbrel, Humira, and Remicaid. The problem is–these drugs are super expensive and not covered by insurance. Without coverage, I’m looking at between $500-1,000 out of pocket each month.

My rheumatologist says I’ve reached a point where methotrexate is my only option. But the huge downside for me, I have to stop breastfeeding. This breaks my heart. When I first had Elliott, I hated breastfeeding. It was difficult and painful and time-consuming. But now I really do enjoy that time with her abd even look forward to it, as silly as that may sound. That is our bonding time.  It really makes me feel good to know that she is growing big and strong and smart thanks to the nurishment I am providing for her.

I know formula is perfectly safe….and I don’t want to knock any mothers who use it. But it is not what I wanted.  I wanted to try and breastfeed for a year. Now, I feel like I am letting Elliott down.

I’m not sure what I should do. My doctor says I don’t have a choice–I need this medication. He says in order to be a good mother to her, I need to take care of myself.  But, I’m not sure I can just stop feeding her. I don’t want tomorrow to be the last day I breastfeed her.

I know I have to do what’s right for me. But it’s just so hard…..

I haven’t written anything on this page for awhile–not because I don’t have anything to say–but probably because I have too much to say and I don’t know how to break it all down. I’ve been bottling all of my feelings up–and then unloading unfairly on Homer–and I know that can’t be healthy. So I’m going to give  writing a try. Homer tells me it will be therapeutic for me to do so. So, here we go. Consider this my time to vent.

At the end of the day, I am the luckiest girl in the world. I have this beautiful little girl who is the light of my life. Elliott makes everything better. She really does. She doesn’t understand all of the sadness and tough times and stress in the world. She just sees love. She is pure and innocent and I want to do everything in my power to protect her and give her a beautiful life. 

And then there is my husband–the man who sees me struggling at times and does everything in his power to make me feel better. I know it breaks Homer’s heart at times to know that I am sad and he can’t do anything to fix it. But, what he doesn’t always realize, is that he does make things better. He always makes things better. Knowing I have him by my side is what keeps me strong.  Homer puts Elliott and me first….always.  I know he makes personal sacrifices so that I can be happy.  If every woman had a husband like Homer, the divorce rate would be 0 percent.

Keeping things on a positive note, I have loved spending everyday this summer with my Elliott. I know this is time together that can never be taken away from us and someday I will look back and be so grateful that we had this bonding time.  Plus, we’ve gotten to spend a great deal of time with my parents and family, which also means a lot to me.

As for my employment status, I am still unemployed.  I never thought I would say that. It’s been almost two months now. I always thought if I followed directions and did everything right, all would work out. I got good grades, graduated from college, had a zillion internships, excelled in my careers. I made sure I was prepared. At the end of the day, it didn’t matter.  I was a dollar sign affecting someone’s bottomline.

Am I bitter?  Nah…I wouldn’t say bitter. But I am still pissed off.  I understand the economy is in the toilet. I understand business is bad for many companies, GMR included, and that sometimes there is just no work to be had.  The thing is–I worked hard for GMR. I was loyal and dedicated and took a great deal of pride in my work for the company and its clients. It hurts me that with one decision, I was out.  I feel like all I accomplished during my time there didn’t matter.  I’m sure many of my friends and former co-workers feel the same way.

What’s so frustrating (as thousands of others know) is that there are just no jobs out there. Sure, I could take a low-paying position with no benefits or hopes of advancement, but that isn’t good enough.  I worked hard to get where I am. I need to support my family. Am I being unrealistic right now?  Maybe.  And you may be wondering why I am stressing so much about a job and not simply embracing my time as a stay-at-home mom. The bottomline…with a new house, furniture, car, and baby….I can’t afford to be a stay-at-home mom.

I stress about money a lot. I get unemployment benefits each month, but that doesn’t even cover the mortgage. So, we’ve cut out anything and everything extra….including most of our savings and retirement contributions…which sucks big time.   Maybe this is just a giant reality check though. I used to be able to go to Target on a Tuesday afternoon and spend $75, no problem. Now, I can’t justify buying anything that isn’t an absolute necessity. 

So, I’ve been applying for some positions I’ve seen posted online. I haven’t heard anything back–even for positions in which I know I’d be a perfect fit.  I was actually offered one job, but it was only part-time and offered little pay and no benefits and, like I said, I really need a full-time position. I’ve been networking too–meeting with owners of local agencies and PR firms–hoping that when they do need to hire, my name will be on their list of possible candidates.  Eventually something is going to work out. I know it’s been less than two months, but it feels like forever.

OK, I didn’t mean to be a giant Debbie Downer, but it did feel good to get some of that off my chest.

Let’s end this again on a happy note. I have an amazing extended family (mom and dad, this includes you!) who loves me and makes personal sacrificies to make things better for us. I have a beautiful, healthy daughter and being her mom is the best job in the world. I have great friends who I adore.  I realize money isn’t everything and there are many, many people who have it worse than I do.

And….I must admit…it is pretty nice to go to the zoo or fishing with my dad on a Thursday afternoon while everyone else is at work….