Pain is at all time high ...

My doctor has upped my medication but so far i'm not seeing a huge improvement. Hurts to do many everyday tasks. I'm rather grumpy. I should probably sit in the chair and rest today, but i won't. Because sitting really just makes the stiffness worse, so how's that going to help. I will rest some, work a little and just repeat. Keeping moving and at least accomplishing a little bit is my goal right now.

Still struggling...pain is at worst it's been...

I am continuing to struggle with pain. My joints and my muscles are both flared up right now. I am struggling with some very simple tasks of every day life, like stirring - I was so upset Sunday when I made a potato salad for our Mother's Day cook out and I had to stop several times while trying to stir it, my hand was hurting so bad, even up into my arm, and I felt like I had so much weakness. Lots of other tasks are the same. But, I'm such a hard headed, determined person that I refuse to give up. I just keep trudging through my every day life the best I can. I certainly don't accomplish as much as I'd like but I try to at least accomplish some. I have done some sewing, though not nearly as much as I need to do. I've also done some gardening and outdoor work, again not as much as I should or would like to do but it's something. It's a refusal on my part to let this disease win. I have a call in to my doctor to ask what I should do next, I'm hoping maybe an adjustment to meds with give me some relief.

Well enough sad me stuff, here is a few pictures of what I've been up to lately.

Perhaps dumping my Dr wasn't the best idea :(

I haven't posted much. I'm just not sure where to go from here. I wanted to believe that going gluten free was going to help the RA pain, it hasn't. It has definitely helped other areas, but not the RA pain. I wanted to believe getting rid of the extra medicines would get rid of some of the foggy "side effects" and help me stick to my affirmation that the Dr was just prescribing "roulette" style, and to some degree I guess I am right there. I don't necessarily feel any better than I would have with the meds, so adding them back in wouldn't really "cure" anything. But, I have to admit that something has to be done I suppose. I can't keep up with the painful joints & muscles. I want to live a normal life, but something as simple as a long walk, or an hour gardening leaves me achy and sore for days. How is that possible? I just keep moving and doing what I want, but I'm grumpy and sore and sad because of the pain. For now I'm just trying to figure out where to go from here....
I don't know that anyone but me is actually reading this blog, so I guess I'm just getting the idea out there for myself. I'll update myself when I decide where to go next ;)
For now though I have a show coming up in 1 week and I am not ready, so off to the sewing room I go for the weekend.
Sarah

Monday Rambling...

First up I am using my cervical traction unit. So far I'm not noticing much difference in my neck pain, but hoping that continual stretching of the neck will lead to less pinching and pain in my shoulders and neck.

I am going through what is termed gluten withdrawl. Who knew wheat and other gluten products were basically like a drug. I am dealing with headaches, nausea and a flu like feeling. But it should resolve soon, and hopefully I will notice more improvements without gluten in my diet. So far I am noticing my GI system seems happier. I won't go into details other than things are much improved in that area :)

I am almost ready to finish my sewing room move finally. I have my tables set up. My shelving ready. My office chair & mat in place. Just gotta get organized and do the actual move. Hopefully very very soon. Though, as usual life is crazy busy, so we shall see.

Happy Monday! Hope you all are feeling good.
Sarah

Gluten free... WHY?

Thought I would provide some insight as to why I am trying to go Gluten Free in my diet.

It's a big change for sure to not eat anything that has gluten in it, but you might be asking, why? You may also be like gluten? what is that? So here are some answers for you.

The 7 Basic Signs of Gluten Sensitivity -

* Digestive Issues
* Fatigue & Crankiness
* Dizziness
* Headaches
* Mood Issues
* Joint Swelling / Pain
* Eczema / Skin Rash

For me, I can honestly say I have all of those signs. All of them have been attributed to various things in the past. Fibromyalgia takes the blame most of the time.

I am not at all doubting the RA diagnosis, however I am wondering if a continual increase in my sensitivity to gluten isn't what has exacerbated all of these symptoms making the diagnosis more apparent?

I have no real "medical" answers. My Dr. is supportive of alternative therapy in that she says "well some people say it helps, can't hurt to try it". But that's about it. I like my Dr but I am so over just trying another drug, another drug and yet more drugs.

I don't see her for about 2 weeks so I'm hoping that by then I'll have some idea if going GF is going to make a difference for me.

Stay tuned, today is day 4 of GF and so far I'm doing pretty well with it.
Sarah

A big change for me... Gluten Free trial...

So today is the day I decided to try going gluten free. I will be sharing my reasoning, my trials and my results (hopefully positive ones), over the next few weeks. I've done a lot of research online, talked with my chiropractor and talked to numerous friends who have gone gluten free for various reasons. I am hoping to see a positive response in my body quickly but i also know that it will take time to really see the most benefit.

I am also picking up my cervical traction collar this week. I will be letting you know how that goes with helping with my neck and shoulder pain as well as my headaches.

Happy Monday!
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 & RA (and fibromyalgia too)

I'm doing a lot of research on the benefits, and potential negatives of choosing Chiropractic care for your RA & Fibromyalgia pain.

I've used Chiropractic care for years on and off, always finding it very beneficial. I had stopped going in the fall, choosing to give the various medications my Dr was prescribing a chance to work. Clearly that isn't happening, and I'm rather disheartened with the traditional medical field at the moment.

Not only am I back with my chiropractor, I'm also looking a much more homeopathic course of treatment.

Will I still see my Dr. Yes, for the time being anyway.

LOTS more to come on this subject in the coming weeks. For now, do you use more holistic or homeopathic remedies for your pain? Comment and let me know.

Sarah

BLAH !!!!!

That pretty much sums up my feelings on just about every subject lately. I'm so so so sore. I'm so so so tired. I'm so so so grumpy. And to top it off I'm also sick. Antibiotics are on board so hopefully that will at least take care of the sinus, ear & throat infection.

Progress is being made on the house. The girls are fully in their new bedroom, just need to do a bit more arranging of toys and such and it will be good.

My sewing space here in the house is also coming right along. However, now I have to stop all projects and start on the big dance studio order. I have 12 snowmen costumes and 16 various animal costumes to get put together.

I hope to have time to do some more research and provide more interesting content to the blog soon.

Please comment and let me know you are reading, I'd really like to hear from you.

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

It's not the sub zero that makes me hurt, it's the SHIFTS back and forth ...

So here in NNY, we just went through yet another stretch of sub-zero temps and I was pleasantly surprised at the fact that I didn't feel "worse". My no stretch of the matter, was I feeling good, but I wasn't feeling worse. However last night overnight, the temps shifted up into the 20's and I am not sitting here with extremely sore hips, ankles, feet & hands. DARN!

This got me searching the internet this morning for scientific data to support how I'm feeling. I found a pretty interesting article that pointed me to an old study by Dr Hollander, in which he built a climate chamber and demonstrated that high humidity combined with low barometric pressure were associated with increased joint pain and stiffness. The theory of the study was that inflamed joints swell as the barometric pressure drops. The swelling irritates the nerves around the joints that sense pain and causes more stiffness.

So off to look at the barometer data for the last day or so. Currently the humidity is high and the barometer is now climbing up a bit after having taken a dip yesterday/last night. So I would say that for me personally this "theory" holds true.

Another interesting little thing I found in my search comes from weatherbug.com which has an "aches & pains" forecast, cool right? So you can check that out here and see for your area what it has to say. Aches & Pains Forecast on Weatherbug

Overall what I already knew, I've spent some time validating. Dramatic changes in humidity, temperature and barometric pressure can and does affect pain of arthritis.

And with that, I am off to take a hot shower and see if I can get moving today.

Happy Monday! Sarah

Working on it Wednesday is here again ...

It's working on it Wednesday again. Seems time is just flying by this January. What are your current projects, I'd love to hear about them.

I've been doing quite a bit of knitting, now "quite a bit" for me is a ruffle scarf and a couple hats in like the last month. I don't knit a lot. And, you'd think that knitting would make my hand pain worse, but in all actuality I'm beginning to think it's helping the pain.

I have absolutely nothing to back me up on this. But, it seems like a bit of knitting every day is helping keep my hands more limber. I am certainly still having a lot of pain, and I continue to have difficulty with gripping tasks. However, the knitting most definitely has not made the pain worse, so to me that's a positive.

A couple of times this week, my finger joints have felt pretty stiff and sore. I thought about not picking up the knitting because of that. But, I did it anyway and what i found was that after a short session of knitting (less than an hour), my fingers were markedly less stiff. I think the action of knitting is perhaps helping to keep my fingers more limber.

By no means am I going to try sitting and knitting for hours on end, I know that would be a disaster and I would likely be in significant pain and have cramping in my hands. But hey i think a "normal" person would too. I guess my "working on it" Wednesday this week is just that, "working on it". I'm figuring out what does and does not fit into my life with RA.

That said, it's also -30 F here this morning. I have NO INTENTION of going anywhere other than under a warm blanket. Yesterday it was -23 F for a low. The furthest I went yesterday was a quick trip to my mailbox. The positive to all this?? Well I'm not as sore as I was during the last bad cold snap we have 2 weeks ago. So maybe just maybe the medicine is starting to help?

Eternal Optimist? Yep, that's me.

Sarah

Fiskers Easy Action Scissors (my own review)

**This post is in no way endorsed or sponsored by Fiskers, or JoAnn Fabric, they did not provide a product to review, nor ask for my opinion.**

I purchased these scissors at my local JoAnn Fabrics store when they were on sale recently.
Easy Action Scissors

The description of the product from the Fiskers website is -

Winner of the Arthritis Foundation® Ease-of-Use Commendation, our Easy Action™ Scissors are the perfect choice for people with arthritis or limited hand strength. A spring-action design opens the blades after each cut, greatly reducing the effort needed for this basic motion. High-grade, stainless-steel blades feature a specially ground edge for maximum sharpness, tested to cut all the way to the tip — essential for anyone who cuts fabric. An ergonomically sculpted handle with Softgrip® provides excellent cutting control and comfort, and a bent handle design keeps materials flat for precise cuts every time. Features Ideal for cutting a wide variety of materials including denim, leather and multiple layers of fabric Awarded the Arthritis Foundation® Ease-of-Use Commendation for a design that is easy-to-use for people with arthritis or limited hand strength Spring-action design gently opens blades after each cut to reduce hand strain Blades ground to a razor edge cut through heavy material with less effort Hardened, stainless-steel blades provide lasting durability Ergonomic handle is sculpted to fit your hand, maximizing cutting control and sensitivity Softgrip® handle adds comfort Bent handle design keeps material flat for mistake-free cutting Length: approximately 10" Lifetime warranty

I have been having increased difficulty with gripping objects, even to the point of dropping my coffee cup the other morning because I simply lost my grip. Some door knobs are proving to be extremely difficult too. And because I have a large costume order coming up in the month of February, I needed to find a way to do a large amount of cutting while limiting the pain.

Right away I was impressed with the soft grip of the handles. It was a bit of a learning curve for me to get used to the spring action of the blades. I think with a little more practice i will be able to do the majority of my cutting out of patterns with these blades.

The other thing i was very impressed with is how incredibly sharp and precise the blades are. I think when it comes to cutting heavier fabrics like denim and canvas I will really see a big improvement over traditional scissors.

One of the first problems i encountered with the onset of Rheumatoid Arthritis was cutting with scissors & using a can opener. The electric opener my husband bought me for Christmas solved that problem and I'm very hopeful that these scissors will to some degree solve the cutting with scissors trouble.

Please leave me comments with products you've found to help your limitations due to RA.

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

My challenge for the next few weeks ...

I have housed my sewing studio at my mother's home, 10 miles away for the last 4 ish years. It has worked well for me to have a dedicated area to sew, but it's also had drawbacks. With a 2 year old, 7 years, one year old basset hounds, a husband and house to take care of, really finding enough time to get there and get enough done is hard. So, we are finally cleaning out the large bedroom we've used for a storage area since we moved into this house about 11 years ago. That room will be for our 2 girls and their multitude of toys. Then their current room will become my new sewing space. It's a 9'x13' room with some wall storage. I will move most all of my storage shelves and my desk as well as ALL of my supplies. It will be a challenge just to get the rooms all moved and then to get my sewing space arranged. Phew.... well since I am sharing with you all my life adjusting to RA, this is part of it too. So here are my before pictures.
*WARNING graphic messy bedrooms, storage areas & sewing disaster areas to follow*
Here is my current sewing area at my mom's -

And here is our large storage "room" that will become the girls new bedroom -

And finally, this will be my new sewing studio -

Now to get at it....