Changes

Time for a change. Well Actemra was not my drug, thankfully my Dr agrees. My blood tests have not been improving and actemra was increasing my cholesterol levels, so done with that.

Changes...now I will be starting remicade. I have high hopes for remicade. I am going into this with only positive thoughts and will not be reading up on it or learning about any of the side effects. I am sure this may seem silly and superstitious but with only a handful of options left I am ready to start carrying a 4 leaf clover and a rabbits foot or any other good luck charm you think will help.

The only reason I have not wanted to try remicade before now is the infusion time. As I have said before my infusion room sucks and has no art, no decor, uncomfortable seats, and no family members allowed in the room. Remicade takes at the minimum 2 hours to infuse the first appt will be more like 3.

Like I said I am going into this one with high hopes, positive energy, and many prayers. This will be the right medication for me, it will work longer and better than any others have so far. I do like that you start at every 8 weeks instead of monthly, but this can be increased if needed.

Right now I still haven't been able to take any of my medications in 3 weeks because I was sick. So I missed an infusion and 3 shots. I have found the positive in this forced break...I am getting a tattoo tomorrow. My Dr said no tattoos while I am on the chemos so now I am off I'm taking advantage. I can't wait I have been wanting another one for a long time now so I am more than ready.

Well a short blog for now. Without having any meds my hands aren't liking typing much.
I hope everyone is having a great day. Thank you for stopping by my blog.

Knitting

I knit a lot. I learned as a child from my step grandmother, but only knew the knit stitch and I didn't do it for very long. I was very active and preferred dancing, mt biking, hiking and cross country skiing to sitting and knitting. I was always moving, I lived in the perfect area for that lifestyle too.

Well now that I have had to set aside most of those activities, ok all of them. I find sitting and knitting fits my life well now. I won't say it's easy or that it's not painful because my hands are definitely affected by my RA. I do find that it keeps my joints moving. 

A friend of mine taught me or retaught me how to knit, she taught me several others stitches than just knit. This helped me expand a lot. I have also used youtube to fill in some areas, there are some amazing learn to knit videos out there. 

I am the same way with knitting as I am with everything else in life, I over-do it all the time. I knit for too long causing more swelling and pain. If I were to just do a small amount at a time I do think it could be very therapeutic for my hands. 

I have found some things that help me with my knitting. The first is great needles. I find the metal ones get cold to easily and are painful to my hands when cold so those were a definite no for me. I discovered the Denise needle set, they are plastic and work great for me the yarn just glides over them. 

The second thing is a more recent find. A friend had suggested a while back that maybe a boppy pillow would help my shoulders sit more naturally while knitting. She was right, it has been an amazing help. For those of you who don't know what a boppy pillow is...it's a horse shoe shaped pillow that is used for babies. The shape fits perfectly around my waist and my arms relax on it while I knit. Very comfortable and takes stress off of several joints, mostly my shoulders.  

I have recently knitted my first sweater, which led to me knitting my second sweater. I never thought I would be able to knit anything so advanced as a sweater. I have done scarfs, hats, even blankets, but to me the sweater is the hardest skill wise. It was always Oh I hope to one day, but I never thought it was truly achievable especially with RA. 

I am incredibly proud of myself for trying it and sticking with it to finish two beautiful sweaters for my daughters. I will be knitting another one soon. So exciting. 

I have my rheumatologist appointment on Monday. I am knitting my Doctor a cup cozy as a reminder of why we must keep fighting my disease so hard, I need my hands, please help me. I hope she likes it. 

Thanks for stopping by my blog again. Hope you are all having a great day. 

Please push in your chairs!

My husband is in a physical therapy appointment. I tag along because we have a couple of errands to run on the way home. I am in my manual chair today because it's quicker and easier. I don't go back with him for his appointment because I always feel a bit in the way. There is a small cafe in this building, it's a large clinic with many specialists and even an outpatient surgery center. Anyways I decide to be brave and wheel myself to the cafe.

Wheeling myself is something I couldn't really do in my old chair, my new cool purple chair is much easier to wheel myself in. Easier, but still hard with sore swollen hands and shoulders. I navigate into the cafe thankful there is a handicapped button for the door, even more thankful that it actually works. You wouldn't believe how many don't work, give it a try next time you see one if you find it doesn't work do a handicapped person a favor and report it. I do notice there are no buttons to get outside of the building from the cafe, so I would have to go back through the building to get to an accessible door. I always wonder why there is still such a lack of access for the handicapped. 

The door is not my obstacle today, lazy people are. I come into the cafe and it's small and has numerous tables and chairs. The hard part for me is no one has pushed in their chairs so for me to navigate my way through I have to push in all of the chairs to get to a table. It's really maddening how lazy people can be. It's so simple to push in your chair, you parents made you do it all the time I am sure, but somehow as an adult no one is capable. 

As I'm sitting here eating my muffin and writing my blog I see 3 people get up and leave and not one of them pushed in their chair. I sit here wondering do I say something? Maybe they would appreciate hearing what a big obstacle a chair is for some, but I feel that they will not appreciate my advice but rather be offended. So please next time you are out to eat or anywhere you end up sitting in a chair at a table, please please push in your chair. 

I hope everyone is having a great day. Thanks for stopping by. 

Rheumatoid Arthritis Awareness Day...also known as Super Bowl Sunday

Today is Rheumatoid Arthritis Awareness Day, but as it is also Super Bowl Sunday the awareness day got a bit lost in the chaos. Also a lot of the promotors and creators of the RA awareness day are on the east coast and did everything morning time their time, which equals way too early morning Pacific time which is where I am. I was a bit sad to not be able to take part in the live chats and other events.

I try to think of anyday and everyday as Rheumatoid Arthritis Awareness Day. That's what my blog and my Facebook page are all about. I can't go through a single day without RA reminding me it's in my life to stay, so I try to share with others to raise awareness. 

Yesterday I went to a good friends wedding. It was a beautiful day and so glad I could be apart of their wedding. There were a few difficulties for me though. I knew I would have to use my wheelchair to make it through the day. We get to the Chapel and it is a gorgeous historic building built in 1884. First problem no ramp. Thank heavens I am still able to walk, but stairs are really difficult for me and even harder when in a flare. I can't imagine how hard it is for my husband to haul my chair up the stairs. I don't like the attention I draw when in my chair either and boy oh boy nothing draws more attention then hobbling up stairs while hubby is hefting wheelchair behind lol. 

I made it in and it was so worth it. Wow what a stunning building. Beautiful chandelier when you first walk in, original tin walls and ceiling, beautiful stained glass windows. It is small and quant and perfect for my friends day. The chapel managers comes up to me and says how she always feels so bad for people in chairs when they come here and apologizes. She talks to us some about the building and I'm glad I got a little inside information. 

The reception is held in another location at a community center. We arrive a little late so the two handicapped parking spots are already taken. Thankfully we are using my manual chair today instead of the electric, no ramp needed for getting it in and out of the car. This building has a ramp thank goodness, but it is steep and long and poor hubby has to push me the whole way. He says it's no big deal he loves helping me, but I know it's painful for him, he has severe osteoarthritis in his knee. 

I had a wonderful time at their wedding, but today my pain and fatigue have kicked in full force. It's frustrating that to go and do something fun that I know my body will make me pay for it in return. I have to always plan a week of rest before and after a big event like this. Some things will take a little less time, but I always have to make sure to get some recovery time after anything I do. 

Today I am relaxing and watching the Super Bowl. I have to admit I am not a football fan. My brother in law always made us watch football and he's a huge 49ers fan so when I was younger I chose the Seahawks to mess with him and I have always liked the underdog :) well now my team is in the Super Bowl. 

Here are the thoughts of a non football fan...I really still do not understand the game, first off a commercial staring bad lip reading Yes! Amazing! Second Ellen's beats commercial I totally love it, note to self must get Ellen blue Beats...now the game why do so many dudes all have to pile on top of each other? There is more butt tapping and ass grabbing in football than in a low rate porn, what's with that? 

I hope everyone is having a great day, as always thanks for reading my blog. 

One silly cold and a lot of pain

I used to be one of those people that could work through a cold, work with broken bones, work when I was unable to walk. Now a little cold makes me unable to walk, ok not completely but it sends my pain sky high and makes walking very hard.

This is not a bad cold, I'm congested in my head and that's about all so far. A cold mixed with an autoimmune disease though is completely different than just a little cold...in fact I don't get just a little anything anymore. 

What happens when you get sick is your immune system goes to work trying to fight off the virus or infection. With Rheumatoid Arthritis you immune system is wacky and attacks healthy tissue, joints, organs, even skin...it sees your body as a virus it must kill off. So for me when I get a little cold my immune system kicks up to full gear and attacks my tissue, joints, organs and skin. This puts me in a full flare.  

I can not get around well and need help with even the simplest things. Last night my husband had to help me walk to the bathroom, in the middle of the night, completely naked. It's a very short distance from our bed to our bathroom, but I couldn't even make that short distance. I had to wake him up to help me. 

There is even more fun to my little colds now, because I am on the chemos to fight the RA my little cold can now last anywhere from a week to a month, sometimes even longer. 

So this little cold is why I haven't been around much online. I have a wonderful friends wedding to attend tomorrow and this cold won't keep me from making it, being there for her special day is more important than my silly cold. 

Thank you again for stopping by. I hope everyone has a wonderful day. 

This was written on Friday Jan 31st but as I forgot to post you're all reading this a bit late. 

RA Gal is an acronym

I realized I never explained the meaning behind my name. There is the obvious I am a gal and I have RA, but it's actually an acronym.  My husband is a military man and the military loves acronyms. He came up with my amazing name. The Gal in RA gal is an acronym for gimp a long. Pretty cute right. I think it's a perfect fit. Thanks hubby as always you are amazing.

I hope you enjoyed that little tidbit of info :) 

As always thank you for taking the time to stop by my blog. 

Overly Active RA Day

 Unfortunately my bad days still seem to outnumber my good days. I still have faith in my new medication. I have noticed improved energy, which I am not sure if that's a good thing or not. More energy makes me want to do more, which my pain level doesn't agree with...it's a vicious cycle. I really wish I could learn where that fine line between getting things done and overdoing it, I think it's like the end of the rainbow.

There are definite stages to my bad times, I'll say times as I hardly ever just have a bad day. First stage is my emails pile up. The funny thing is I will still open them and look at them, but then I can't follow through with the action it requires ie replying or following it to a webpage to complete an action. I look and just keep marking them as unread.

I go through Facebook and want to comment on things but I only hit the like button, commenting is too hard, I worry if I'm making sense in the comment because I know my brain isn't clicking as well as it should. Even this gets to be too much, soon I won't even hit the like button. I know if people see me on Facebook I will get messages and I just don't have it in me to be able to answer a message. I don't want people to think I'm ignoring them so I just don't like anything. Soon it gets to where I don't even get on Facebook. 

I have little habits when my pain is bad. I always try to hide it from my family, but my husband is so observative he always catches onto them. I'll share a couple of my signs; I wiggle my legs first when the pain level starts hitting higher than my normal level. Then when the pain gets even higher I hum, I have caught myself humming in public before, it was a little embarrassing, I have no idea how long I had been doing it. When I hum it's not even a song really it's just a soft hum with no rhythm. 

I hope soon my good days will out number my bad again, I have so many things I want to do. I feel like my life is on hold, constantly waiting for a good day to come around, but more and more time keeps passing. 

I should think of better phrasing than bad day, maybe active RA days or in my case overly active RA days. In all honesty in my life I rarely have a bad day, everyday my husband, daughters and dogs make me smile,make me so proud, make me laugh etc etc. So really with such an amazing family there are no bad days. All in all my life is good, I just wish I had less overly active RA days. 

Thank you everyone for stopping by. Hope everyone is having a non flare day.