I also garden ...

I'm still battling with some of the worst pain I've experienced so far. I realized the other day that I am going on about a year since the hand pain first started. This weekend though, regardless of the pain, I have to get my garden in. I have lots of baby plants that need to get moved outside. I need to get my seeds in the ground. So, as I posted before I just keep going as best I can. I often am moving at a snail's pace, but I'm moving.
I'll post some photos after I get things in so you can watch them grow with me.
Happy Memorial Day Weekend.
Sarah

So very sorry.... life exploded...

Girl Scout cookies came in and BAM my life exploded. I'm the leader for my daughter's troop. We ordered somewhere over 2000 boxes of cookies, so yah the last couple weeks have been a bit ummm, NUTS! And let me tell you what a great time I picked to go gluten free. I did finally cave after several days and ate a grand total of 4 cookies and yes you guessed it, major tummy problems, so obviously I am on the right track going gluten free.

On that note, I have noticed some improvement in my pain level. Huge improvement in energy level. And minor improvement in sleep. So perhaps, just perhaps I am on to something that might finally help. I have yet to notice improvement in the muscle pain associated with the fibromyalgia, but honestly I've dealt with that for so long I would probably not know what to do if it got better. Okay, but yah I would like to try it!

So I will continue with my gluten free (for the most part) eating. I hope to eventually go to mostly low low carb eating, limiting myself to only carbs found in fruits & veggies. And keeping any other carbs to a bare minimum. It's a slow process and I fully recognize that.

I will attempt to get back to updating this blog on a much more consistent basis.

Sarah

Happy Birthday to me... a reflection on being 37 years o l d ....

So this year, turning 37 has become just a reminder that I am feeling O L D. I mean my neck is so stiff and sore. My hands are so slow working some days, and other times they just don't plain work right. It hurts to walk for too long because my ankles and feet become so sore, that taking another step just doesn't seem worth the pain. At night it's hard to sleep because my hips hurt so badly that no matter how I lay, I am not comfortable.

Should a 37 year old woman be feeling this way? I don't think so.

So I continue on my quest to change that. I'm determined, though tired thinking about it so much. Currently I am putting several plans into action, I will share more on each of the things I'm doing in the coming weeks.

That's all for today. Enjoy your day. Enjoy your family. Savor the good things in your life. Stay positive that you can change the negative.

Advice for myself but happy to share with you all too!

Sarah

Chiropractic Care & Exercise for RA

I have found a lot of information out there about Chiropractic care and Rheumatoid Arthritis. As usual you will find some swear by it's help, others say it's no help. *shrug* I suppose it's best to say "your mileage may vary". I however and hopeful that this more natural approach to tackling my disease will work. I am already frustrated by the Dr. mentality of "throw some pills at it and see if it helps". I would much rather focus on range of motion, moderate exercise and nutritional changes & supplements.

What am I hoping regular chiropractic care will bring me? My goals are -
Improve my range of motion of my joints.
Have more flexibility & stamina to exercise without pain.
Greatly improve my muscle tone and my strength.

I am exploring nutritional supplements and diet changes as well.

At this point I have absolutely no exercise program. I am just too sore and in pain from everyday household activities to even consider extra exercise. But, I realize this is super important to get myself out of this flare. I'm already finding that "resting" my joints that hurt does not help, they just feel stiff and sore. No improvement comes from simply trying to not use them. Instead, I am finding that using them the best I can is helping keep them limber. For example, one might think knitting is a really bad idea for someone with pain & stiffness in their hands. I am finding the opposite. Short intervals of knitting (an hour or two max) seems to help me feel like my hands are less stiff. I experience no extra pain when I spend a short amount of time knitting.
The same I am finding true for sewing. The biggest complaints I have for pain related to sewing is the neck pain i have from the focused attention it requires. The ergonomics of my sewing area need to be addressed to help with the stiffness & pain i have in my back, shoulders and neck. It's for sure a work in progress.

My chiropractor is working hard with me on getting those shoulders & neck loosened up. I am even considering a special medical device to help my cervical spine, but more about that later.

For now I encourage you to do your own research. Find what's going to work for you. I will share more along the way.

Happy Sunday! Sarah

Painful weekend ...

Yesterday my daughter had basketball and a girl scout event. I sat on bleachers at the basketball game and did some standing & some sitting on a metal folding chair at the other event. Last night I was so very sore. And I woke up this morning in horrible pain.

I am so very tired of RA making even the most stupid simple things so hard for me. I have a follow up this week with my Dr and I am hoping she has a new plan for pain management because so far it's definitely not working.

I hope to get back to regular blogging this week. My little one finally started feeling better yesterday. Today I am moving the girls bedroom, despite the RA pain. I'm just going to power through and get it done.

Happy Superbowl Sunday. By the way, I do not watch sports, but I do like the Super Bowl commercials. LOL

Sarah

Simplify ... Possessions don't define us ...

I'll be honest. I haven't blogged much this week because I don't want to talk about my RA. I've been a hermit all week because of the severe sub zero temperatures we are dealing with here in Northern NY.

I've been busy this month, getting rid of "things". It has been in preparation for the moving of the girls bedroom & creating a sewing room here in our home. At first, I was facing the task and just dreading it. I knew it had to be done, but still ugh, how awful doing all this sorting, cleaning & throwing away of junk was going to be, right?

I was wrong. It's incredibly freeing. Parting with "things" that I have not used, literally in years. I have always been somewhat of a pack rat. Constantly thinking, I might use that for "x", someday. But then someday never seems to arrive.

By no means am I becoming a minimalist. But I have instead become realistic. I pick up an item and I say to myself these three questions.
1 - Can I live without it? Is it an heirloom? There are family items I will never part with. But let's be honest sometimes utter junk invokes a memory we don't want to let go of. So in my case I do allow myself a small amount of "junk" that is attached to an important memory. I suggest a memory box for these items. One smallish keepsake box that is tasked to hold all your special treasures. 2 - Will I use it? Keeping in mind a reasonable projected timeline for when I will actually use it.
3 - Can someone else use it? Based on the items condition, usefulness and value I determine if I will sell it or gift it to someone.

On Thursday, the local mission store came and picked up a large load of donations. It was freeing to have those items out of our storage room & onto hopefully someone else that will be blessed by them. The same can be true of the huge bags of clothing I have hauled off to the donation drop boxes. Going through the girls clothes and gifting them to people that can use them. Going through mine & hubby's clothing and doing the same or sending it off to the donation box. It's hard to believe just how much "stuff" we've held onto. And for what reason?

The hard room is yet to come in the "letting go" and simplify phase of this project. I have attempted to pair down the fabric stash. But let's face it, I have so much fabric. And with that comes a significant investment. It's just not something I can drop into a goodwill box. So my goal relating to that is this -
I will USE up as much of my fabric as possible. Instead of going and buying new fabric to create with, I will come up with ways to use what I have first. I have so many patterns, pattern books and saved tutorials for all kinds of awesome projects. Also, I will sew up all those fabrics I have in mind for a project, but keep getting set aside. That way, my girls may actually not require any store bought clothing at all this year, a huge money saver!

How does this relate to my RA? I feel like the less I have to worry about, the less stress it will cause. Stress about "things." Sure there is lots of guilty feeling about not tackling the clutter, not keeping your house tidy enough and other feelings of guilt when you have a debilitating disease like RA. The less "things" there are to vacuum around, dust & move from one place to another is certainly easier on your body. Less stress, less work to do = a happier life living with RA, right?

I sure think so! Join me in my quest to simplify.

Sarah

Sewing Saturdays & Sundays ...

An ideal weekend? Is there such a thing, I don't know. But for me I know that any day is a good day for sewing. I hope to devote my weekend blog posts to sewing ideas, inspirations, and just sharing in general things I love to do.

Right now I am working on refining my sewing skills & techniques. I'm a great sewer but like every other profession or hobby, there is always room for improvement.

This weekend I am devoting some time to taking an online course about techniques. This class is offered by Craftsy. Craftsy is an online store that offers video tutorials on hundreds of different crafting related topics from sewing to knitting, photography to painting, even cake decorating.

What's so great about this you might say? Well you can take each portion of your class on your time, anytime. Up in the middle of the night with insomnia, great go watch a 20 minute segment of your class. It fits into any schedule.
Take a look at what they have to offer. They are offering some awesome sales this weekend 1/18 & 1/19.

CRAFTSY FLASH SALE WEEKEND

Treatment Topic Thursday ...

Thursdays I will devote to talking about treatments, both conventional and unconventional. I will try to go in detail of each topic and hopefully you will find the information helpful. If there is a topic you would like me to research and post about I'd be happy to try to do that, just message me.

Today's topic is Plaquenil (Hydroxychloroquine). This is the first try drug for RA according to my doctor. They start here because it is the least likely of the RA treatment drugs to cause side effects. The interesting thing about this medication is that it's actual original use was as an anti-malarial drug.

It's used to treat the inflammation of both RA and Lupus.

Possible side effects -

abdominal cramps, diarrhea, heart problems, reduced appetite, headache, nausea & vomiting, altered eye pigmentation, acne, anemia, bleaching of hair, blisters in mouth and eyes, blood disorders, convulsions, significant vision difficulties, diminished reflexes, emotional changes, excessive coloring of the skin, hearing loss, hives, itching, liver problems or failure, loss of hair, muscle paralysis, weakness or atrophy, nightmares, psoriasis, reading difficulties, tinnitus, skin inflammation and scaling, skin rash, vertigo and weight loss

That huge list of side effects doesn't exactly seem "mild" to me. I have been on this drug now since my diagnosis in October. I have noticed no improvement in my symptoms as of yet though I was told improvement should be noticed in 6-8 weeks. My dose was increased in November after being on it for 6 full weeks. Still, no improvement has been seen. At my recent appointment i discussed with the doctor that I am seeing no improvement with all the drugs they have me on, including this one. In fact, I am feeling worse. She added another drug to my "cocktail" and wants to see if this one will help the others also work better. So, when i go back in February we will consider which drugs are or aren't helping and again adjust.

For me this is the frustrating part of being at the beginning of this process. A large list of medications to take daily, side effects you aren't sure are coming with this drug or that drug. And continued pain to the point you don't think ANY of it is helping.

Trying to stay positive is definitely an UPHILL battle for me right now. I pray daily for answers, for pain relief and for strength to do the things I have to do. This little saying was posted on Facebook the other day, it accurately describes how i feel many days lately.

What day is.... what day is it ...

It's HUMP Day.

But on this blog I am going to call it "Working On It Wednesday!"

It will be a weekly chat from me about how I'm "working on it". It will be a weekly focus on what I am struggling with, working on or attempting to do. Might be about my RA. Might be about my work from home business. Might be a hobby I am exploring.

So what am i working on this week? After having a lot of pain over the weekend, I have noticed as the temperature has risen this week, my pain has decreased some. So, I'm seizing that opportunity and continuing the sorting, cleaning and re-arranging of the house in anticipation of my sewing studio moving back here.

It's amazing the amount of things I am finding that I had totally forgotten about. Phew, it's crazy. Things that we have had in our "storage room" since we moved into this house 11 years ago. I am a HUGE pile of items for our local charity thrift store. And a HUGE pile of garbage stuff too.

I am gonna keep at it. I'll post some updated photos perhaps another day.

Sarah

Fiskers spring action scissors ...

So I contacted a few companies that make cutting implements to inquire about products that might help me as I deal with the hand pain associated with this lovely disease.
The Fisker's Company replied that they do have a line of "spring action" scissors that are for people with hand problems. So this week I saw in the JoAnn ad that they have them on sale. So, I'm hoping to get a pair and try them out. Super reasonable price
Check them out here. Does anyone have sewing tools they have found work well for days when you need to sew but your hands are hurting? Would love to hear about them.





This post is in no way endorsed by The Fiskers company or by JoAnn fabric. Neither company has contacted me to review or endorse this item. I am just doing my own market research.

Weather changes ... making plans ...

Remember your old grandma or grandpa that would say "oh there's a storm coming, i can feel it in my ______ " , fill in the blank with their ailing body part. Well, let me tell you folks, i surely feel like an old arthritic grandma this week.
Not much to post about this weekend as progress on my reorganization is slow. But I am continuing to try and be positive and upbeat. But, boy is it sure hard.
So while I'm not busy doing actual organizing i sure am busy searching for ways to organize. Making a list of things I want to try and tackle. Who has a pinterest account? It sure is a great place for storing ideas. Want to follow me on pinterest? I have a couple boards that might interest you.
Sarah on Pinterest

Alternative Treatments ..

Of course as with any other disease there is all kinds of information out there about alternative therapies that can help. I have yet to try anything but traditional medication therapies since I am still so new in this process. But, like any other modern woman, I'm always looking through websites, articles in magazines and books, that discuss treatments both traditional and non-traditional.
This particular article i found on Health.com talks about 10 alternative therapies. While most were standard things I'd heard before, exercise, physical therapy, etc. This talks about using a very common, readily available nutritional supplement.
FISH OIL

Fish oil can ease pain and inflammation in people with rheumatoid arthritis. Fish-oil capsules may, in fact, be as effective for relieving pain and inflammation as nonsteroidal anti-inflammatory drugs (like ibuprofen and naproxen), according to Dr. Kolasinski. RA patients in the studies that found fish oil helpful took high doses, typically 4 grams a day or four standard fish-oil capsules. Most people consuming fish oil for overall health take one or two capsules daily. But there's no strong evidence that other dietary supplements or herbs, such as glucosamine or evening primrose oil, have any benefit in RA patients. “The herbals are really not where it’s at,” Dr. Kolasinski says. Also, be sure to tell your physician and pharmacist about any nonprescription remedies you use.

The original article is found here -
Health.com
Is there anyone that has any input on this from personal experience? Would love to hear about it, leave me a comment or message me.
Off to continue the organizing for the room moves ;-)
Happy Hump Day! Sarah

The Right Angle: Proper Ergonomics for Sewing Tables

This article on Craftsy is a great resource when shopping for a sewing table. It's basic information but it reminds us that what works great for one sewer may not work for another. Simple buying a "sewing table" does not necessarily provide a perfect fit for you.
I myself use a desk originally designed as a computer work space. It's large and fits into a corner, and it's the perfect height for me to sit comfortably at. It also is large and accommodates my 3 different machines I use all the time, therefore eliminating the need to have to set up & take down machines for different functions.
Finding a chair that had height adjustment may also be the answer to making your table work to the proper height for you. For me it's also important to have a separate cutting table at approximately waist height. I often cut several patterns out at one time. I also often am cutting from bolts of fabric vs. small pieces of fabric. Therefore trying to cut on a shorter table (for instance a dining room table) would cause a big increase in stress to my back & neck from bending over to cut for a long period of time.
With RA working in an ergonomic environment is so important. Keeping our hands, wrists, shoulders & neck from additional strain & potential damage to joints is so important.
I am currently revamping my sewing space and as I set it up, I will be thinking in depth about my comfort and ergonomics of how i do my work.
I will share some before and after shots of my space. At this point progress is slow, thanks to an increase in pain with the cold temps here, but I hope to make a bit of progress every day and soon be back to sewing.

Sarah

Sub Zero Temperatures in NNY = worst pain so far

We have below zero temps here in Northern NY state. With the wind chill we have temps around -35 fahrenheit. I am experience joint pain in places I've never had it much before. My ankles & feet, back & hips and then of course my hands are very painful.
I found a very interesting article while i was browsing the internet about cold weather and it's effect on RA and other related diseases.
Fact or Myth: Weather Affects Arthritic Joint Pain

My sewing hands ...

I love to sew. I've turned my love of sewing into a small work from home mom business. It's very small now, but i had hoped to grow it more and more each year. I'm not giving up on that dream, but I am worried.
I love to make unique things. From clothing for kids to super hero capes & masks. I even do a lot of re-purposing of items into new & exciting things. I even quilt from time to time.
So of course in the back of my mind lately has been, what will I do if I have to give up this hobby? Well the only answer I can come up with is that I will NOT give up. I don't want to, I don't intend to and I hopefully don't have to.
I am exploring options to make sewing work better for me. I am moving my sewing studio back to my home, so that I can sew more when I am feeling good, no need to get out to "go" to the sewing space, it's right here. I am also working on ways to make that space more ergonomic and comfortable for me.
So my word for today is ADJUST. I am going to adjust my surrounding to work better for me.

Resolutions 2014 ...

I'll admit I'm not great with resolutions, but i intend to stick to them this year. I need to get my RA under control. I need to continue my work from home mom sewing business. I will prevail in 2014.

GOALS -

Write a new blog post at least 5 days a week.
Create & post at least one tutorial every month.
Lose 50 lbs.
Exercise at least 5 days per week.
Find either a local or online support group for people with RA.

There it is, seems very attainable to me.
Feel free to comment with your goals for 2014. I'd love to hear them. I hope that one of your goals will be to follow my journey this year.

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 :)

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.