Friday, August 2, 2013

Guest Blog: A lifelong battle with JRA & Lyme

I would like to welcome my first guest blogger and someone very dear to me, my sister Julia. She is one of the toughest fighters I strong and so beautiful that it is hard to believe that she is sick. Without further adieu, here is Julia... 

I have been very hesitant to write a post for Sarah's blog. It has been a hard choice for me because I don't want to seem like I'm whining or wanting people to feel sorry for me. Especially since I am in nursing school and see people everyday that are so much sicker than I am so I realize in a lot of ways I am very fortunate.

Julia Israel, Lyme warrior and Juvenile Rheumatoid Arthritis Spokesperson
I'll start out with my story from the beginning. I was diagnosed with Juvenile Rheumatoid Arthritis at 2.5 years old. My parents had noticed that my finger was swollen but they just assumed I'd had a normal toddler accident. However, one day my dad was tossing me up in the air and when he caught me I started screaming. My parents of course were concerned I'd broken a bone or pulled something out of place, but I explained to them that Daddy straightened the arm that's "not supposed to straighten".  Then they realized that I was holding my arm at a 90 degree angle up against my chest/stomach all the time. After several weeks of testing, my parents were told I had Juvenile Rheumatoid Arthritis (JRA). I grew up trying a wide variety of treatments; there were no pediatric rheumatologists in the state of Alabama and the medicines weren't as good as they are now so we tried everything that was out there. 

My doctor told me there was nothing they could do for my arm- that it would always be bent at a right angle and that I should go ahead and learn to use my left hand- which I did, which always tricked up pitchers in 2-3rd grade softball ;). I wore a metal brace for half of the day and also when I slept in hopes that it would keep my arm from retracting further. My parents, being the incredible people they are, decided that they were not going to give up. I went to a physical therapist who I hated because she "hurt" me to help me, but she was incredibly effective and changed my life. 

With Angie, we would do strengthening and stretching exercises for my arm, then, with several assistants, pull my arm as straight as she could and then cast it as quickly as possible. We would go back several weeks later, remove the old cast, straighten the arm a little more, and recast it. This was very painful but worked so well that my arm was nearly completely straight after a few months. However, one day in church my arm completely retracted back into the 90 degree angle and we had to start all over. However, after this time it worked! It was amazing and allowed me to live a much more normal life. During my elementary school years, I also developed a form of arthritis in the eye called iritis, which can lead to blindness if untreated, but I had no long term effects after treatment with steroids.

At some point during all of this, more joints became involved including my knees, ankle, jaw, hip, and shoulder. My knee was swelling to such an extreme degree that in 7th grade, the doctor removed some synovial tissue and cleared out some cartilage in an effort to keep me from coming to the office every couple of weeks to get it drained. This period of my life was an incredibly difficult one. I was in constant, excruciating pain but didn't want to say anything because I didn't want to seem whiny or be seen as "different". 

I was so sick and anemic that I looked like a ghost. We found an old picture of me on a skiing trip from 7th grade and my face is honestly only about one shade darker than the snow behind me. My parents would have to wake me up before my sisters in order for me to get stretched out enough (especially my legs) that I was able to leave bed. I wore leg braces that kept my leg straight while I slept, but it was so painful I'd always take them off in the night and wake up with knees I couldn't straighten past 90-100 degrees. 

Even with this, I continued playing sports the best I could. In 7th grade basketball I would often come in just to shoot some threes at the end of the quarter or half, but one game I remember making several shots in a row and the opposing coach yelling, "how can you not guard her?? I can run backwards faster than she can run!" It really hurt my feelings at the time because I was very self-conscious of my obvious limp, but I tried to think of it as a compliment. 

However, feeling so alone left me in a very dark place and I became very depressed. Feeling alone and misunderstood are two powerfully painful feelings and unfortunately, my parents didn't realize the high incidence of depression among people, especially adolescents, with chronic diseases, so I suffered for a long time before my parents realized what a dark place I was in and got me professional help.

In high school I really felt a lot better than I did in junior high. We had a new pediatric rheumatologist at Children's in Birmingham, and she put me on Vioxx, methotrexate, and Enbrel, a shot I gave myself 2 times per week for 10 or 11 years. I still felt nearly constant pain, but I didn't have so much swelling and was able to participate in sports like I wanted. 

I began working on a campaign with the Arthritis Foundation of Alabama to raise funds to bring a pediatric rheumatologist to the state of Alabama (my 7th grade doctor left after 2 years or so). Along with two other children who had much more severe arthritis than I, we made a video to raise awareness that "Kids Get Arthritis, Too!" and to raise money for an endowment to hire some pediatric rheumatologists. I spoke at various events (oh how i hate public speaking!) However, after all our hard work we raised several million dollars, hired 2 pediatric rheumatologists, and built a state of the art facility, one of the bests in the nation. This is truly my proudest accomplishment to date.

Once I started college though, things went downhill again. I started  flaring, my knees became hugely swollen again, once so bad my 5'3" sister and 5'2" mother had to carry me up two flights of stairs to my dorm and then I had to depend on my roommate to help me get dressed. I started seeing a new rheumatologist who I really liked and respected and he changed up my treatment regimen to once a month infusions, in addition to the meloxicam, plaquenil, and the maximum dosage of methotrexate that I had been on for 10 years. 

He continued draining my knee and injecting it with steroids, but every couple of months I was back with the same problem. I also started having jaw problems and had to get my TMJ joint injected with steroids (not pleasant). Finally, one day I came in to the rheumatologist and had so much inflammation spread all throughout my body, my doctor decided to run an infusion of steroids with my infusion for my JRA. I got home and literally didn't leave the bed or eat for 3 days.

After this last incident, my parents and I decided we had to try something else. My sister had been diagnosed with chronic Lyme disease and the doctor was interested in seeing me since he had successfully treated and cured several patients diagnosed with JRA. My rheumatologist thought I was insane, but I had one more infusion left to try before I was out of options with JRA meds, so we figured why not give this Lyme doctor a shot. 

I went and saw him, stopped taking all of my arthritis medications, and the swelling in my joints went away! It has almost been a full year that I have been off my arthritis medicines and I have had minimal swelling- avoiding draining my joints and avoiding damaging steroid injections.  The doctor also told me NO steroids! The steroids actually cause the Lyme spirochetes to go into overdrive- hence why I got so sick after steroid infusions. 

It sounds really strange to most people, but I was thrilled to have Lyme disease. JRA is a life-long condition that you can only try to improve symptoms, but there's not a cure. With Lyme disease, even though its a long road and some people never get 100% better, I am just so happy to be able to get better at all. I was telling my dad the other day that even if I only got 25% better than I've been my whole life I'd be thrilled!

I'm nearing a year of treatment coming up this fall and still have several years to go. It has been a really, really hard road and besides the lack of intense inflammation, I actually feel worse than I did while on JRA treatments. The doctor told me this is to be expected because the Lyme bacteria and co-existing infections fight back when they are attacked with antibiotics.

I think where I am again, where I keep finding myself, is in a very low place because I feel alone, isolated, and like no one understands me. I am in an accelerated degree masters nursing program and every single day is such a struggle for me. However, I don't want to complain or be a "Debbie downer" so I always try to keep a smile on my face and pretend everything is okay. I think this is part of my problem with feeling like my friends don't understand me- I usually don't look sick or act sick, but it's really just because I'm trying to hide it and power through, just like I always have. 

Pictured here with her wonderful fiance, Julia looks more super-model than super-sick, which is why so many have no clue how torturous this disease has been to her during the span of her entire life. -Sarah
I never wanted arthritis to stop me and I'm not going to let Lyme stop me. I just pray for more understanding from my peers. It is hard for people that are healthy to understand though. Often I can sleep anywhere from 14-20 hours without waking up and then require a nap later. I sometimes take hot baths 3 times a day in an effort to curb my pain. I keep pain pills with me to get through the days. I sit in the dark for hours because I suddenly get the worst migraines. It really is a lonely disease, as I believe most chronic diseases are. I feel like I've missed out on so many experiences and friendships because of my life-long struggle with JRA and Lyme disease. There was a whole year in college when I hardly left the bed except to go to class occasionally and I feel like a lost a lot of great friends and experiences I could have had. 

Because I don't really share much about how I'm really feeling, I sometimes feel like I'm right back in junior high again, completely misunderstood in how much I am really struggling because of these diseases. I don't want people to feel sorry for me, I want people to realize the situation I'm in and just care and show compassion more than anything else.

Luckily, I have an amazing fiancé that helps support me, especially through this spring which was the worst I've felt in my entire life. He cooked, he cleaned my apartment, he looked after our dog, he went grocery shopping, etc. He has been truly amazing and has made it possible for me to make it through one year of this degree and has kept me laughing, even when I feel my worst. 

I just want to share my story to spread awareness and also to help the friends and families of a person with chronic Lyme disease. Know this is an incredibly lonely, dark disease and that your friend/family member with the disease needs your support and company at times too; make that phone call or text, invite them to do something, offer to bring a meal when they can't get out of bed, simply let them know you're thinking of them! That always does me wonders- even if I want to be alone all day, just knowing someone is thinking about me and caring for me is a huge booster.

As I start a new school year, I am extremely anxious about how my body will handle it, as my body completely rebelled against the insane hours of the nursing program when I got costochondritis, constant upper airway and throat infections, and stomach bugs. I am really terrified about starting school again, but I am going to continue fighting as hard as I possibly can. I'll need all the prayers I can get.

Finally, another huge worry I have that feels like a constant burden is that until I get better, I can't be the fiancé/wife to Cory I want to be and I can't be the super mom I want to be one day. Cory helps me so much and is so amazing to me and I just want to give back to him all he has given me.

I want to close this post by saying I know how incredibly fortunate I am. I've had parents that never gave up on getting me better, parents that never let me quit or believe I couldn't do something because of my JRA, two totally compassionate sisters willing to do anything to make me feel better, and a fiancé that I love beyond belief who has been so patient with me through the pain, the tears, the mood swings, the fatigue. I have been so, so blessed in so many ways, and I cannot wait to truly take on this world once I am better.