Friday, October 31, 2014

Why Using My Hands Is So Important to Me

I totally didn't expect to record this yesterday. I was just off of the tennis court and I had sung so much but the timing was just perfect and I love this piano. Just love this piano, such wonderful deep sounds. I had just told everyone at rehearsal about my last doctors visit and just overcome with gratitude because even though I have a awesome doctor, I still know how is the great physician. I am still so thankful hearing my meds are decreasing a little bit and I learned this song really quick. So here is a glimpse into my life and what I am called to do and LOVE to do. A acoustic piano version of Big Daddy Weave. I promise to record it again on Saturday when I perform it then. https://www.facebook.com/video.php?v=845362252170188&set=vb.360400487333036&type=2&theater

Wednesday, October 29, 2014

I Kicked Gluten-What's different? Read On.

My dogs vet suggested I go gluten free to help with my Rheumatoid Disease. A year later the differences are incredible. 1. My Rheumatoid Disease is much better. 2. My stomach problems are just about gone, unbelievable since I used to carry Pepto everywhere I went. 3. My Polycycstic Ovarians Syndrome seems to have worked itself out. I was ready to get a uterine abrasion done. Not needed anymore. 4. My hormones seems to have leveled out and I no longer take progesterone. 5. My migraines are gone. Well not completely but I can't remember the last time I had one. That one shocked me as well. 6. Despite being on methotrexate my hair is awesome. Thicker and growing again. 7. The biggest of all.....when I do have a rheumatoid flare I don't swell up. I just don't. That alone would take days to go away. Those are some major differences..makes it worth trying.

Tart Cherry Juice- If it's Not Disgusting It's Not the Correct One

Quick recap because I have a appointment on a tennis court in a hour and I need work on my serve (wasn't the highlight of my matches last week after a summer of getting much better). My inflammation markers were up, no clue why except I wasn't drinking the cherry juice as much as I used to. I bought quite a few bottles last night at Whole Foods, which wasn't as expensive as I thought, shocking for Whole Foods (or Whole Paycheck as my friend calls it). Tart Cherry is a wonderful anti-inflammatory. It is also believed to help with pain. The greatest benefit I see with it though is sleep. So after my two cups yesterday I have to say I slept like a log (that's an old expression). I can really have a hard time sleeping since developing RA, so many nights up in pain just disrupted my pattern. Tart Cherry Juice really helps keep me asleep.

Tuesday, October 28, 2014

Great Doctors Visit Today

Check up day. I always go in a little anxious because who knows what blood work may say. I always worry about my liver too with the methotrexate. Everything was fine which is a huge relief. The question mark of the day was why my inflammation markers are up and yet I still have no (ZERO) swelling. My original thought is I'm not drinking as much of the tart cherry juice as I was before (that has been corrected, bought 5 bottles tonight from Whole Foods). My daughter about a half hour later remember that twice in the last month I have gotten glutened. Once from a Dominoes pizza that had to be cross contaminated. That was about 6 weeks ago. I still have the gluten rash, probably because I keep getting exposed. The second was at Longwood Gardens. The complimentary soup had gluten. My own fault. After being gluten free a year I should know better than to eat anything without questioning first. My swelling went away a few months after going gluten free. It was visibly reduced in a month. (So yea, try it for longer than a few weeks for swelling to reduce). Mystery solved there. The best part however......I'm reducing my methotrexate!! I am sooo excited. I hate the drug and especially the needles. So this is definitely a step in the right direction. I realize there is still work to be done but this is the first reduction in medications for me so I am beyond excited to be going in this direction. The remission I set as a goal seems to be closer at reach.

Friday, October 24, 2014

I Feel Good So I'm Doing It

Wednesday was a rainy day here in NJ. I mean rainy. One of those days you just don't want to move. Having RA its hard enough to get motivated sometimes without the weather jumping in and complicating things more. I woke up with a tiny flare in my left thumb (remember I am re-thinking the weather and how it affects mybody) but it did go away after a methylprednisone pill. I was going to play tennis anyway just because I think sitting around just makes the pain last longer but the rain hampered that. For the last two years, even before being diagnosed with Rheumatoid disease, I have been wanting to become a more serious tennis player. But in consecutive years I had torn meniscus in both knees. One I had surgery on the other I biked through (btw, I highly recommend biking as to surgery). So, last night I got a call from my daughters tennis coach at 6:30 that I could sub in a doubles tourney at the club. My first thought was "I'm soooo tired." I had to play until 10pm. I really was at war with myself. Then I remembered the last year and thought......there's been so many times I couldn't play because of pain or swelling or the numbness got in the way.....GO DO IT. So I did! The result. Two wins 6-2 and 6-1, and when I switched partners I lost 6-2 but I held my own and made my shots and am so glad I did. I don't ever want to use this disease as a crutch to not move when I can. Reality is, there will be enough times that I will want to move and it just won't happen. Well, it's that time again, back to the court. So thankful to be here with meds doing a pretty good job compared to last year still in dire pain. RA truly sucks. We are at war. I am determined to win.

Wednesday, October 22, 2014

Preparing for My 3 Month Doctor Visit

Had the pleasure of being a pin cushion yesterday. Only three vials of blood this time. I think my doctor forgot something. If you are like me the memory is going. I have so much going on between students, playing tennis, my daughters dance schedule and her tennis schedule and keeping my house organized (I have to or I get brain fog, I don't get it either, OCD maybe) that I can't remember what I want to ask when I get there. I am one of those "list" people. Gotta have a list or I don't know what to do with my day and what needs to be done. In the back of my daily checklist I started to keep my questions for the doctor when I go (or sometimes on my phone). Generally my list is about how I'm feeling, questions about medication, when I flare (trying to find a rhyme or reason, hysterical I know) or different herbs that I've read may help with Rheumatoid disease. It's really a handy tool. I can keep track of my pain levels as well. I encourage any rheumatic to do the same.

Thursday, October 16, 2014

Is it the Weather?

I have friends that say they feel pretty lousy when rain is moving in. My answer was always, it does affect my osteoarthritis in my knees but not my rheumatoid arthritis. That was until about a week ago. I had another flare, probably brought on by stress no doubt, but there was a new weather system moving in as well. So not only was I having a bad day, so was a friend with Fibromyalgia, so was a friend with MS, and so was another friend with a autoimmune disease I cannot remember right now. Coincidence? Four different people, four different autoimmune diseases. All of us feeling equally crappy. Today here in NJ its raining. Well, just starting but it is starting to move in, Baromatic pressure was changing. All day long I had the familiar RA pain shooting through my arms, hands, and fingers. I have to admit, I am starting to think the weather does indeed affect me. Yesterday was my Humira shot so it's hard to say if the pains went away today because the rain is finally here, because my Humira shot is working, or if it was the adrenaline rush to play this morning because I unwrapped a beautiful new Prince racquet yesterday but my pains are gone. At least as of this afternoon. I will definitely keep a better eye on the weather and pay better attention to how my body is feeling. Maybe the weather does affect me.

Tuesday, October 14, 2014

A Less Painful Humira Shot-Yes!!

It's that Tuesday...Humira shot time. If you've read my whining about needles you know how much I enjoy this injecting crap. At least this one is easier, no drawing out meds and all that blah. So I went online to read if the shot might be better tolerated and less painful in my stomach. My stomach already takes a nice beating from the Methotrexate Shots. I realize I've been forgetting to do the "PINCH". I do that with the metho shots. So after my 15 minutes of icing down (I was bruising because of advil and playing tennis, you gotta do what you gotta do) getting nice and numb in my thigh I did the pinch and guess what.....much more tolerable. When I started to reach that level of "WTF" I pinched harder. I also have my husband remove the pen as he leaves for work so it's ready for me. I've learned a ice cold pen equals being stabbed by a knife. Not that I know what that feels like but ice cold Humira has got to be close. I don't think I will be dreading the next Humira shot now....YIPPEE.

Monday, October 13, 2014

Methothrexate Shot- Tried Something New

My biggest complaint about being on Methotrexate and also the Humira at first is.......tired. I call it STUPID TIRED. You know where you can barely function? Kinda look at life through a tv screen where you don't have to interact tired. If you don't know about the wonderful drug methotrexate drug it goes like this.....you take it and you cannot take folic acid for 24 hours. The drop in energy is brutal. I used to take the pills so I could carry them with me but when I switched to the injections I started doing it after work on Sunday. I work a long day on Monday and it was rough. So I decided to get up earlier on Sunday and do it before I leave for church. Sunday was pretty tough by 5pm but it's a easier day to be really tired than Monday. What I think I liked most of all, I didn't have all day to get my nerves all worked up because I really hate needles.

Sunday, October 12, 2014

My GMO Gluten Food Rant

I went out to lunch today with a couple friends and my family and since it was our first lunch I decided to enlighten them about my disease and being celiac and how nice it would have been to know that before I developed rheumatoid disease. So, if you've heard my rant before (and I see my daughter rolling her eyes at me) you can skip this post but it you haven't...I never knew I was celiac. Looking back now I see all the signs. Irregular cycles eventually leading to being diagnosed with Polycycstic Ovarians Syndrome. My stomach problems were insane. I always joked that I had a stomach like a baby. I remember going to doctors asking why and I would get prescribed medicine to make it better. Then I developed migraines after an accident. I have no doubt the beginning was accident related but not the 20 years afterwards. I still get headaches but generally a stress headache. I carried pepto everywhere once they made it into a pill (if you didn't know that ITS AWESOME). I joked if I didn't burp I was sick like a baby. Nobody looked. Nobody also told me my wheat became a GMO some time ago. I'm glad to know I wasn't the only one. I'm not gonna argue if they are safe or not. I personally don't like them. If you do and are comfortable eating them then more power to you, that's your business and your right. I don't remember always being this way, just since my twenties. I am now in my forties. I wish a doctor would have looked further. I also wish my hands would have been diagnosed correctly. The numbness, but, I do understand that as a musician it's not very easy. Carpal tunnel, tendonitis..all parts of the trade. You deal with it. But, this was sooo persistent. Now I know. I hate that numbness. I think if someone along the line someone had me checked for celiac I probably wouldn't have rheumatoid disease. Nothing factual there but I think it's highly likely. So, don't let your doctors just prescribe you pills. That's US Medicine. Find out why. I don't remember so many kids with peanut allergies either? Some schools ban peanut butter now. We recently went to a Japanese Hibachi restaurant for lunch. It was hysterical, Gluten intolerance, celiacs, soy allergies, I truly thought the chef was going to run into the kitchen screaming. We have another friend who is dairy and beef free but he wasn't there, I think that would have been the breaking point for our poor chef. I've never seen food allergies like we have now, it's not a coincidence. If you aren't sure if some issues are gluten related and you eat gluten, give it up for two weeks and see how you feel. If you are feeling better you have your answer. I honestly think they are messing with our foods so we will be on their drugs. I promise I do not have food stockpiled in my basement and a ten year water supply.

Friday, October 10, 2014

Another Flippin Flare

Stress and auto immune diseases do not get along. Let me repeat that for you....STRESS AND AUTO IMMUNE DISEASE DO NOT GET ALONG. Had to deal with something irritating last night and my minimal flare turned into being up most of the night saying "I get it." I did manage to get out on the court for 45 minutes. I mean it was my left hand after all (one handed backhands really do have an advantage with a left hand flare, they equally suck for a right handed flare). I admit. I get "yelled at" by quite a many people because I'm gonna be in pain and feel like crap anyway so if I can play without it being excruciating.....I'm doing it. End of story. If I'm gonna be in pain I may as well be in pain doing what I love to do. But, I know how to rid myself of the what ails me and plan on doing that. To celebrate the latest screw you rheumatoid milestone I had to make myself feel better. So I bought this :). Can't wait to get it. I decided on purple strings and a nice pink grip. The possibilities are endless.

Wednesday, October 8, 2014

RA is tough but I'm tougher

I saw a picture of this today. You know, it's that old picture of the lady flexing her muscle with the red bandana. I thought it was awesome. My statement has become "I'm Rheumatoid tough". For those of you that suffer with it, you know what a struggle daily life can be and nobody except another rheumatic of someone with the daily chronic disease flare can understand it. Needless to say I loved it, and I stole it from a lady in my facebook support group where everyone understands. Sometimes I just wake up cranky. With the feeling of doom and what is going to happen today. Is this going to be another bad day? I think I went through that for so long that I just expect the days to be difficult, they aren't anymore and sure I have some pain everyday. It doesn't even have to be rheumatoid pain, sometimes it's my foot (too many problems to name but I think the stress fracture was the beginning of my disease, I had never broken anything), sometimes it's my back (car accident in 1996). But then I did my Bible study and I realize that regardless of what is going on it's all a test. To see if I will doubt again, go back to the grumpy me who expects all to go wrong or a flare to hit at any second (seriously does that ever go away). I felt better. Then my daughter woke up MISERABLE. There shoud be SUPER CAPS for those wonderful mornings of crank and moodiness. I was quite irritated. Then I pulled up to the court and thought, you just never know what you aren't going to be able to play again or need to rest because some thing is flaring and I'm not sleeping. Be thankful it's a beautiful day and you can play so go play hard. And that is exactly what I did. You know why.....because I am rheumatoid tough! I read so many stories of people where I was and I am just thankful!!!!

Friday, October 3, 2014

Wondering

I am starting to wonder if as a rheumatic you ever stop worrying about flares. I've had one in two months and yet when I wake up every morning with the numb hands I wonder if it's the beginning of a flare. I'm quite sure that it's something else going on as to why I wake with numb hands and it has been going on so long (I am a musician after all). But every morning for that half a second I start to panic again. And then it almost always goes away.

Wednesday, October 1, 2014

Sleep- A Year Later PS

SLEEP. That five letter word. Where do I begin. I have learned to take cat naps. For me, that is huge. I always fought sleep, better things to do. Now, sometimes I will just close my eyes for 5 minutes if need be. I am just more tired than I used to be. It's part of the disease for sure. Learn how to incorporate resting (not necessarily sleeping) into your routine. It helps greatly.