Tuesday, April 21, 2015

My Love/Hate Relationship

Most people with JRA have a love and hate relationship with Prednisone. These small innocent looking pills can work quickly and effectively to reduce joint pain and inflammation but have a slew of unpleasant, annoying side effects. Personally, the biggest and most severe side effect of Prednisone is that it can raise intraocular eye pressure after an extended period of time. I have been battling with glaucoma for the past 7 years as a result of my Uveitis eye disease, and always need to keep a watchful "eye" (pun intended!) on my eye pressures. However, on some occasions I have needed Prednisone to help bridge the gap as we were waiting for treatments to work or to just get over the hump of a flare. There was a period in college when I was on Prednisone for a few months and every time I look at pictures of myself from that period, I can immediately tell what my JRA disease activity was based on the "moon face" in my pictures, In fact this "moon face" became so common, that after having my wisdom teeth removed, some relatives thought my JRA was flaring and it was Prednisone causing my cartoon like swollen cheeks! My third least favorite side effect of Prednisone is the "munchies" or extreme increased appetite I get while taking it. I already constantly crave sweets and have been trying to cut back on processed foods and dairy as much as possible, I know this will be much more challenging when the munchies set in!

I bring all of this up because my knees have been slightly achier than usual the past few weeks. My rheumatologist suggested a short treatment of Prednisone to tie me over for the next month, with the hopes that the Enbrel will be in full effect by then. Personally, I am still in denial over the achiness of my knees and am hoping it is just the changing weather that is causing me pain. However, I understand that active disease is not good for my pre-pregnancy planning as well and Prednisone is one of the few medicines that has been studied and is generally safe during Pregnancy. Therefore I am going to give it one more week to see how my knees feel before diving into my love/hate relationship with Prednisone once more.

Wednesday, April 15, 2015

That Familiar Ache

After 27 years with JRA, you become very in-tuned with different types of pain and what they may mean. The achy, sore pain after overdoing it. The throbbing, hot pain of a flare up. The popping, cracking, locking pain of degenerative knee changes. Up until now these pains have just been another part of my life and have not caused more concern then determining whether to take some advil or call my rheumatologist for a check-in.  However, when I woke up in the middle of the night on Sunday with my knees burning, it caused my mind to race. Is this the beginning of a flare? What are my medical options? Is this what I am going to feel like for the next year? Am I going to be able to get pregnant and deal with this without being able to take medicine for the pain? What happens if it takes a year to get pregnant and this is my life for the next two years?

Well some of these questions are legitimate, some are definitely an over-reaction of my tired, sore, exhausted state at 3 am. Fortunately, after a day of icing my knees and advil PM, I am feeling significantly better this morning and am once again optimistic for the potential ahead. Although, I do hope that I won't be stuck in this "limbo" period much longer, I have always felt that once I am pregnant, I will be able to deal with the pain and whatever comes my way. Because I know the light at the end of the tunnel, will be the best, most rewarding experience of my life. I need that goal in my near future to keep myself pushing forward. At this point, that goal is still around a curve at the ledge of mountain with no tunnel in sight...

Sunday, April 5, 2015

The Decision To Have a Baby

I believe the decision to have a baby is a deeply personal and important decision that should be made between two loving partners. However, I'd like to share a little insight into some of my thoughts throughout this process.

I have always wanted to be a mother. I love babies and children. I always loved babysitting and often feel like a child at heart. In my career I treat babies and children as a pediatric occupational therapist and without talking, listening and laughing with my patients, I would not be able to get through my day.

I always felt like I would know when the time was right. When most people are deciding to start a family they would like to be married, have a steady job, steady finances and a house or home they are comfortable living in. I've been lucky that I have known my husband for 11 years, so finding the right partner was not a challenge. I have a steady career and stable living situation. However, I feel like having JRA trumps some of the other factors in deciding to have children. I feel like I don't have the luxury to wait until we have our perfect house. I can not be sure of what the future holds for me medically. Will I need a knee replacement? Will I need more eye surgery? All of these questions made me want to pursue having a family while I was healthy and made the other factors less of a priority.

I have had relatively quiet disease activity since I graduated college. I felt like this was my chance. JRA is an unpredictable disease and I wanted to have a child when I was the healthiest I could be. I know that it will not get easier to be pregnant or care for a child as I get older. Therefore after talking with all my medical providers, they all agreed that I was healthy and were confident and hopeful with my plan. I know it may be the most challenging journey I have experienced so far, but I am very excited to begin it!