Life with a Flare

My Lungs Got a Close Up and I Got to Choose the Gown Color Every semester I seem to be muddling through at the end. In fact this trend pre-dates my college career. December of senior year I was diagnosed with Uveitis. Two days after graduation I had hip surgery, meaning the two weeks before that I was medication less, not pretty. Then in college I was diagnosed with Celiac about 5 days before my first set of finals. Spring of last year the week before finals was when erythromycin stopped working and my downward spiral towards the feeding tube began. This past fall semester my POTS was so bad during finals I thought I was going to pass out during my math final, I lasted until 2 hours after it. In the ER I found out I at least got a 90% on the final and the doctor high fived me.  So in true Joan fashion something had to go wrong in the past two weeks of my life and sure enough something did. Unlike in the past I was much more blindsided by it. With past finals weeks the health pr

Dear Illnesses, Enthesitis- You are my oldest constant companion. For years no doctor could find you and yet I was well aware of your presence. At age 10 you started to attack me, stripping me of my active lifestyle. For all you took away from me you have given me just as much if not more. You taught me how to fight and that doctors do not always know best. You taught me perseverance from a young age. Without you I do not think I would be able to handle my other health issues. Thank you for preparing me for the world. I wish you waited a little longer to show up but I am glad you came. Uveitis- You took me by surprise, possibly the only condition to accomplish that. I will never forget the day you were found in my left eye. I was scared and not sure what lied ahead. I still have a fear of eye drops and all things near my eye thanks to you. You taught me sometimes I have to do things I hate but thats just the way it is. AMPS/RSD- You were the first to affect my nervous system, for

Two years ago I was doing my research before my first rheumatology appointment and I discovered most people with autoimmune arthritis are on self injectable medication. 90% of kids with Juvenile Arthritis take a medication call Methotrexate, which can be taken orally but is mostly done by injection. Although I was also pretty positive we were not going to find anything at my rheumy appointment so I didn't think much about it. Once we discovered Uveitis in my eye though I thought my fate was sealed. Just under two years ago I was trying to prepare myself for the idea of sticking a needle in my leg. Within a few months of my then rheumy not doing anything I realized as long as I was under her care, for better or worse, I was not in danger of having to self inject. Under the care of my current rheumy the thought of possible self injections was on a very far back burner in my mind for a while but since my joints have done so well in the recent months it has totally disappeared. So to

I am doing this post for invisible illness week which is this week.  1. The illness I live with is: Enthesitis, Amplified Musculoskeletal Pain(AMP), and Uveitis 2. I was diagnosed with it in the year: Uveitis-2012, Enthesitis and AMP-2013 3. But I had symptoms since: 2006 4. The biggest adjustment I’ve had to make is: I have had to learn I can't do everything I want or everything that other people my age are doing. 5. Most people assume: I am perfectly fine or I just have osteoarthritis and not an autoimmune disease. 6. The hardest part about mornings are: Getting out of bed, doing my hair, and figuring out what outfit will be the most comfortable for the day (and accommodate any swelling I may have) 7. My favorite medical TV show is: Grey's Anatomy (and Scrubs even if it is no longer on) 8. A gadget I couldn’t live without is: My Freezer 9. The hardest part about nights are: Not being able to fall asleep in a comfortable position and waking up in the middle of the night in p

I manage to survive all three of my appointments yesterday somehow. First up was my OS for the six weeks on the left hip and six months on the right hip. He was happy with where I was with both and said to worry about the motion but focus on the strengthening. When I asked for a cortisone injection in my left knee he said okay, but at first he said that he thought the pain in the left knee was probably referred pain from the hip, but after he examined it he did notice fluid. I also ask for a prescription for a home TENS unit, so that is being ordered as well now. My last question for the OS was when can I start horseback riding again? In 6-8 weeks (at 3 months post-op) I can start riding a little but no jumping, and I can ride without restrictions at 4-6 months post op. The rheumatologist appointment was not exciting, I may eventually get an MRI on my left knee but not for a while since I just had a cortisone injection. We aren't changing any meds or anything. I was not total

I can not believe it has been a week since I last wrote, so much yet so little has happened. I still get to spend about 6 hours a day in the CPM machine, as well as wearing my oh so lovely hip brace when I go out. At this point I am in almost no pain. I also had to get new crutch tips because chunks of rubber were coming off of my old ones. Oh and do you see that split in the top? On the 4th of July I did not do much during the day, I decided to get through my CPM time so I could go out at night. It was nice to get out since I did not go out much last week except for various doctor appointments. I made s'mores and watch fireworks with my friends. My friend was very insistent that the chairs were stable and I should sit on one because of my hip. S'mores Selfie Fireworks! On another note, today I had an opthamologist check up, and I am happy to say I am Uveitis free! It was the first time I had discussed the possibility of me finding another specialist at

Yesterday was the first night of Passover and there was about 35 people at my house for a Seder, since I live in a split level house, our living room (where we ate) and our kitchen are half a flight of stairs apart. Bringing food and plates and what ever else up and down said stairs really took a toll on my already flaring joints. Happy Passover! Since I wrote on Thursday the flare got worse on Friday and Saturday but started to get better Sunday. Well the whole Passover thing threw that away. Now my shoulders are deadish, my knees are just slightly better.  Also Friday was like the first time since about 1 week post op I had any pain in my right hip, which is pretty good I guess. I think it was just trigger by my hips trying to make up for my knees. Also my knees are completely holding me back from getting farther in hip surgery recovery which is really frustrating. Today I got up really early to go see the eye specialist to check for uveitis, and for some reason I had

My life is almost normal. I am done with crutches (for now but I will take that)! My PT is very happy with my flexibility and ROM. I can not believe I am walking on the same hip I was 6 weeks ago, it really is amazing. I also get to go back to work this week! I am so excited, I love my job so much and I have really missed it! Although since I am me one joint could not do this well without another one having a complete fit. Actually a few having fits. My knees are out to get me, they are! My right one swells anytime I use a exercise bike and well my left knee was the joint that started this whole mess. My OS was hoping that the knee pain was mostly referred pain and would be fixed when I had hip surgery. I am here to say that as my right hip is pain free my right knee is doing the worst it has ever done! At least my shoulders seem a bit happier than they did when I was on crutches, although that is not a high bar. Putting my hair in a pony tail still takes more skill than it should.

Yesterday was full of good things! About time! First I got my braces off! And then I found out both of the Lyme test in the second set came back negative! I just need to get one last set in 8 weeks and I am in the clear for Lyme! Not sure if I ever explained that the official name for the inflammation in my eye is uveitis, do yourself a favorite and do not google it, the results aren't good. The good news is that according to the specialist I saw for it yesterday I don't have uveitis. It either means the first eye doctor made a mistake or the NSAIDs I started taking helped, hopefully the former but either way I will take it! Also if it is the former than an auto-immune disease is less likely. The eye doctor also said that I have enough joint involvement I probably won't have a problem with uveitis again, because apparently it tends to be a problem in kids with fewer joint problems. (Never thought having so many bad joints would be a good thing) Unfortunately the joint t

Today was my eye doctor appointment. The eye doctor found inflammation in my left eye, something that is a sign of auto-immune arthritis. As the doctor put it, it is another piece in the puzzle of the diagnosis. Since I haven't gotten my blood test results yet, I do not have all the pieces. Yet as I look at the puzzle I realize there are enough pieces to know what the picture will look like. I don't like what I see. I really do not have the emotional energy to write a lot today so I will write about what is next later.