Tuesday, December 31, 2013

Happy New Year ...

Tomorrow I will post my resolutions. But for today I want to reflect on this past year.
It started out pretty normal, slowly my fibromyalgia seemed to be getting worse. But in May/June when suddenly i had horrible pain in both of my hands I was confused. What was causing it? Did i injure myself and not remember? But, how could I have done that to BOTH hands? Was it my sewing? That was the thing I was sure was the problem. But I sew so often. I tried limiting it and even on weeks when I didn't sew I still had problems with pain.
My diagnosis in October was expected and scary. I'm still scared. The meds i am currently on are not working. I am going in for another visit sooner rather than the 3 months they originally were having me wait. I just can't let this get worse, i need to stay proactive.
The year has been hard on my physically. But, I remember so many friends & family who have lost their lives to cancer, car accidents, sudden deaths and who struggle with diseases much worse than mind. I thank God for this. I also pray that God will help me turn my struggle into good for others.
That is where the idea for this blog came from. I want to take my struggle, share it with the world and my fellow seamstresses. I won't always focus on RA. I will touch on other areas of my life and my sewing world.
Happy New Years Eve all. Tomorrow I will share my resolutions with you. I am determined to do many things this year, and I look forward to sharing them all with you!
Sarah :)

Monday, December 30, 2013

This picture scares me...

When I started researching RA, i came upon this picture. Man does it ever scare the living daylights out of me. I hope to never have this much damage and deformity, but still i can't get these images out of my head.
What about this disease scares you? There's more than this photo that scares me. The chronic pain in my joints. The possibility of not being able to be as active with my daughters. The need to give up some of the things I love to do. So many things. BUT, I am definitely trying to overcome the things that scare me. I am powering forward with a positive attitude, instead of letting the negative thoughts overtake me.

Sunday, December 29, 2013

8 Common Symptoms of RA ...

I thought it important to share with my readers the 8 common symptoms associated with RA.
They are -
Morning stiffness and pain your joints that last more than 1 hour.
Stiffness that occurs after a long rest.
Fatigue and loss of energy.
Joint inflammation, including swelling and warmth around the affected joints.
Symmetrical joint inflammation (both sides of the body).
Low grade fever or flu like symptoms.
Difficulty moving the affected joints.
Joint deformity and nodules/lumps under the skin (elbows & hands are most often affected).
Please note, i am not a medial professional. I cannot tell you if you have or don't have RA. I am simply a person exploring my disease and sharing what I find on this blog. If you think it's possible you suffer from RA you should seek the advice of a medical professional.

Saturday, December 28, 2013

What scares me most ... and my choice to adjust.

When I started research RA, I quickly found that my love of sewing could most definitely be affected. I have learned so much by visiting various websites. The one quite that has resonated the most to me is a quote found on the home page of RA.com. It says "Rheumatoid arthritis (RA) can mean more than just pain.
As you know, RA means pain. But you may not know it can also mean destruction — not just of your joints, but of the things you love to do. The longer you live with the aching, stiffness, and swelling of rheumatoid arthritis, the closer you may be to having your favorite things taken away."
I definitely don't want to lose my favorite activities. The one I'm worried about the most being my sewing. But, I also stop and think about all the other things that would be affected in my daily life. Already I have a hard time with things like can openers, opening jars, scissors and anything where i need to grip strongly. And I've only been affected with my hands for about 7 months. WHY ME???
While I could certainly sit and be depressed about this, I choose to just push forward. I am choosing to research. I am choosing to keep following up regularly with my Rheumatologist to work on a treatment course that will help me. I am choosing to try and adapt my life and activities to try to minimize pain and still be able to do the things I love. I fully believe that these choices will help me prevail. I refuse to let RA win.
My plan is to adjust my life, adjust my surroundings, adjust anything i need to in order to continue doing all the things i love the most. I look forward to sharing these adjustments with everyone. In the meantime feel free to comment and tell me your story.

Friday, December 27, 2013

A new challenge...

I'm starting this blog with the hope that it will not only provide an outlet for me to talk about my new challenge, Rheumatoid Arthritis, but also will be a place for others like me to find valuable information.
I'm going to start by introducing myself and telling you a bit about how I got to this point. In future posts I hope to share useful information, tips, and sewing related topics as well.
I'm Sarah. I'm 36 years old. I live in Northern NY State near Watertown. I've been sewing since I was a child. My first sewing project was a skirt I made to earn a badge in my girl scout troop. I remember it vividly, it was a sailboat print fabric and I was so proud of it. I sewed on and off for two decades but, got back into it heavily once my first daughter was born, 7 years ago. It's the "thing" I call my passion. It's the "thing" that helps relieve my stress. It's the "thing" I love to do above all else (well okay i don't love it above my husband & daughters but they aren't "things" exactly).
I've struggled with the muscle pain, head fog and poor sleep of fibromyalgia since I was 19 years old. I've pretty much learned to live with fibro, i take it easy when it flares up. I don't medicate it, i just deal with it the best ways i can find.
In May/June of 2013 I had a sudden onset of pain. It started in both hands. Within about a week they hurt so badly i sought the help of my family doctor. He did the standard lab work looking for an answer. All tests revealed no problems, in fact some of my labs are downright awesome. We tried various methods of pain relief, but nothing helped. So by the end of the summer he referred me to a rheumatologist. My first appointment was in October. She's a wonderful doctor and after a thorough exam and listening carefully to how my symptoms came on, where i was hurting and what we'd tried she proclaimed that she believed I was in fact suffering from the onset of Rheumatoid Arthritis.
To say I was surprised would be a lie. I like most Americans had already done a lot of internet searches and knew that is what my symptoms were pointing to. By October not only did both of my hands hurt but now I was starting to have pain in other joints too. She started me on some baseline medicines. We talked in depth about where to go from there. And she ordered a bunch of very special lab tests. I continue to follow up with her, changing medicines already and still seeing no relief but unfortunately, worsening of my pain. I'm hopeful we can find a combination of medications that will stop the damage from proceeding.
How this affects my sewing life? Well it makes it very difficult, to be honest at times I have considered throwing in the towel. But I just can't, i can't give up the one thing I feel really talented at. I can't give up on my passion. So, here I am, dealing with this new challenge.
I look forward to sharing my journey with the world. I hope I can inspire others to not give up when faced with a challenge. I don't intend to let the RA win. Please join me in exploring the disease. The treatments. The adaptions. And most of all the SEWING I will do with RA.