Thursday, February 27, 2014

At the close of the day.....

despite all the flares and tiredness (and we were away the weekend before so I'm still tired from that) service didn't go too badly. My foot is better. Out of boot and walking at home. My left shoulder is hurting quite nicely and right hand flaring. This too shall pass right? I am trying to remind myself that it is probably getting worse because I am off the methotrexate and adjusting to the Arava. Honestly, I think I may want the methotrexate back. It seemed to work quicker. I was able to play today and played and sang well. Even had to improve. So, if my hand flares, again, I only have 3 piano lessons to do. I have to keep reminding myself that once the Arava kicks in (I've only been on it a week) I will feel better. Just gonna take a little time. Now I hear Amy Grant.

My Rally Song

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First Blog, a Day of Frustration with Rheumatoid

Before my morning coffee today (and of course after I fed the dogs) I cried. Just sat at my dining room table (with coffee) and cried. Frustration is a under statement today which is why I started this blog I guess. A chance to get it all out. So for all those out there with rheumatoid, I hope you will follow me and help me in the journey and I hope I will also help you. This disease SUCKS. There aren't enough capitals in the world to describe how much. I haven't cried with this disease in about 5 months, since before I was diagnosed. I went from Horrible to Fantastic and thanks to a fall back to Not so Good. All in about 5 months. I am a musician, homeschooling mom, a former dancer (ballet and modern), and a tennis player. All summer we spend on the court just about, my daughter plays USTA Junior Team which is why I started to play again 7 years ago. I didn't start to get serious about it until about 3 years ago. I went from severe winter person to adapting to playing outside in 100 degrees. My girls dance schedule keeps us out more than in. I'm one of those, on the go. This new journey of mine started in September of 2013. I had knee surgery about a year before (tore my meniscus on the tennis court) and I had severe swelling. I thought I banged my hand going for the crutches in my closet. Simple explanation for the sever swelling that happened the next day. I was playing for a memorial service. My right hand just started to balloon. The pain that followed was off the charts, not even my Percocet would touch it. Two days of agony and being up all night. The next week I was playing my guitar and what would happen....my left hand swelled up and two nights of pain. That got me thinking something was going on. The pain was like no other I have ever felt (and I've had quite a few injuries over the course of my life including a car accident that kept me out of commission for a few years). The circulation in my hands would just stop and they would be so cold. The next week, both my hand swelled, and my shoulders, I headed for urgent care. I knew this wasn't anything I was familiar with. The Doctor there put me on steroids (an incredibly high dose. I was told to get a lab test done for rheumatoid and gout. I of course had no clue how severe rheumatoid was which was probably a good thing. I had a client (doctor) tell me it is the worst arthritis but it didn't fully register. I spent that night crying in bed for strength to see this through. The pain was unbelievable. The helplessness I felt was lonely. Of course, the test came back positive for rheumatoid. I was put back on steroids (what I know now to be an incredibly high dose) and sent to the rheumatologist. The disease was definitely confirmed in October. I was told I would be put on a fluffy type drug. That didn't happen. I was put on methotrexate. My flares decreased quickly. Oddly enough, I was told by my foster dogs vet that giving up gluten would help with the inflammation since I was swelling up like the elephant man. So I did. It has been about 5 months and I have to say, I don't swell up anymore despite any flares. I weened off the steroids Thanksgiving Day. I was playing in a tennis tournament before that so even with the methotrexate I didn't want to give them up. I felt awesome. No flares. Despite being a vegetarian I had to adopt a more plant based diet (had to give up Morningstar and Boca and Gardenburger products and take up lots of seeds, which is ok, I like them). I frequently drink Tart Cherry Juice to help with pain and to help me sleep. I drink Aloe Juice, also to clean me out. My vitamin regiment is a bit extreme, milk thistle, flax seed oil, vitamin d (who would think a tennis player who spends hours in the sun would need vitamin d), folic acid and of course a multi. I carry them with me all the time so I can fit them all in. New Years Day I got the send off from my doctor to see him in 3 months. Blood work looks fabulous, doing great, feeling great. I don't feel like I have rheumatoid at all. I'm riding about 40 miles at the gym weekly and able to weight train also. My goal, being stronger and leaner and back on the court come January (yes indoors). Fast forward to January 11th. My daughter was dancing at a nursing home. As I was walking her to the auditorium on a wet raining day, the nursing home floor was wet, I didn't realize it. My foot came out from under me and BOOM, landed flat on my back (the one that was injured in a car accident). That was on a Saturday. That Sunday while riding the bike at the gym I felt the old familiar pain in my right hand (always the right hand first). I didn't realize any bodily trauma would cause flares....now I know. My back was hurting and I was back on steroids trying hard to keep the flares to a minimum. It is now February 27th. About two weeks ago I had this weird rash start on my right hand. I just happened to be seeing my ER Doctor client and she thought it may be a drug eruption and to stop my meds. I did, went back on steroids AGAIN. Saw the doctor the next few days. We switched from Methotrexate (which I really didn't want to do, it worked very well and my only side effect was being very tired the next day, no hair loss or nausea, just tired). I am now on Arava. Still on steroids waiting for it to kick in. Only 10 mg which isn't too bad. I played tennis this past Tuesday. That night instead of hitting the gym I felt pain in my right shoulder. I thought it was the crazy hitters I had played with so I took the night off from the gym and rested instead. I didn't want to have another flare. Happened anyway, and this time, in a new spot. MY FOOT. The foot I had fractured 3 years ago that started my injury plagued life of the last 4 years. Thankfully I have a boot. It's on. I'm in tears. I just want to feel normal again. To be able to not be on steroids and be able to play with panic of whether or not my hand is going to hurt. I have to play and sing for a funeral this morning or I would still be in bed. Crying is probably not a great idea needing to sing so thankfully this helped to stop that. Or actually maybe it is, getting all that crap out of my head. Gotta be a bright side right? So if you are reading this you are all up to date. I hope to share this journey with you. Things I'm trying, things I'm doing. Things I am considering trying. I honestly believe that we are put on this earth to help each other so maybe if you are just diagnosed this will help you. I hope so. I have to add, I am a church musician and a Christian. I have been since a church musician since I came to know the Lord. Since the beginning of this I have had one song help me through that I hold onto. Jesus Culture Freedom Reigns. I have freedom knowing the Lord has my back. I may be healed I may not be healed I don't know. If I can, I will post a link of me practicing it. You can tell it's close to my heart. I'm also a week into trying something new that I hope will help as well. Juice Plus. I've heard testimony of people going into remission. They aren't vitamins, it's not a juice, it's fruits and vegetables put into capsules that you take daily. It's only been a week and I am still eating more plants than most people but it's worth a shot especially seeing it endorsed by Dr. Sears.