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. 

Change of name

I am sure you have heard many people wish that there would be a name change away from Rheumatoid Arthritis. I admit it really is an unfortunate name as Arthritis is just one symptom in the disease. Many people believe the name should be changed to rheumatoid disease. The thinking behind this is by changing the name we will change how people view the disease. I don't think this is a bad idea, but I can't see putting all of my energy behind it either. 

I personally think the scientific name of a disease is not that easy to change if it's even allowed at all. I believe that there are too many medical books, journals, studies etc etc with the name rheumatoid arthritis on it to make it an easy change. I believe if it's allowed to be done that it will take many years to actually change over. 

I feel instead that we need to change the way people view the disease.  That disease being rheumatoid arthritis. If someone asks about it take the time to explain the disease. Let them know that there are over 300,000 children in the US alone who suffer from this. Let them know Rheumatoid Arthritis is not osteoarthritis it knows no age and it's a systemic autoimmune disease with no cure and the current treatments of today are chemo therapies. 

1,000 children younger than 15 years of age died from arthritis and other rheumatic conditions in the 20 years from 1979–1998 (average = 50 deaths / year) This is taken straight from the center for disease controls page. So let them know Rheumatoid Arthritis can be deadly. 

Let's be the change. Let's educate people, take the time to really educate them. Get the facts behind it. Practice a short response with a lot of facts to share when anyone asks you. You can use exactly what I just shared with you. 

Get the tshirt. Have you seen the great new shirts from the arthritis foundation? They are blue shirts with white writing that says "I am the face of arthritis" and guess what they come in kids sizes. We get enough of us out there at young ages and add kids into the mix wearing these shirts showing people what Rheumatoid Arthritis really is we will see changes. We will be the change. Get out there today and change one persons view of arthritis being an old persons disease! We can change their view, we can get noticed, bring the facts, and raise awareness to better educate people. I'm excited and ready! Are you? 

I thank you all again for coming to my blog. 

Remember if you enjoyed my blog the best compliment is to share it with your friends. Don't forget to like my Facebook page www dot facebook.com/RAGal75 or twitter RA_Gal  it's the best place to keep up on my blog posts. 

Acceptance

We went to the movies last night and the theater we went to is not an easy one to navigate when you're hobbling, so we brought my wheelchair. The handicapped theater seating had no one in them so I was able to sit in the theater chair and park my wheelchair beside me. The theater chairs are leather and much more comfortable than my manual wheelchair. We were actually able to sit all together as a family in the handicapped row. It was really great.

There was a tall teenage boy sitting behind my wheelchair and he had his feet up on the bars. Everytime he would adjust his feet he would get closer and closer to my wheelchair. I felt like his feet were on my head and in my space, now remember I'm not sitting in my wheelchair. This feeling of having my personal space invaded while he was too close to my wheelchair tells me I have made a huge hurdle in my new life... I have accepted my wheelchair as part of me. It has always been a tough relationship for me with my wheelchair, I didn't want it, I don't like that I am at the point where I need one, even if it's not all the time. 

But this moment of this young man intruding on what I felt was my personal space was a huge turning point for me. ACEPTANCE. I accept that I need a wheelchair now and then. I accept that this is my personal wheelchair. I don't want your dirty shoes on the extention my body sometimes needs, just the way anyone would be bothered if his feet were actually hanging over the chair you were sitting in. 

I kept pushing and pulling my wheelchair this way and that way to keep him from putting his feet on it. Finally I got bold, this is very out of character for me, I turned around and politely said can you please watch out for my wheelchair when you're resting your feet? He apologized and took his feet down. 

If I had more time I would have told him this wheelchair is a part of me, it's what allows me to do these things with my family and when you put your feet on it I feel as though you are invading my personal space. That's right, I wanted to tell him how my wheelchair was a part of me. This is such a huge turning point for me. I accept my wheelchairs. They are a part of me, they help me do fun amazing things with my family again and please keep your feet off of me. 

Acceptance sure feels good. Thank you for stopping by and remember if you liked what you read make sure to follow my blog so you get notice of any new ones, and the best way to compliment me is to share my page with your friends. Hope you are all having a wonderful day. 

Invisibility Chair...aka my wheelchair

My wheelchair has an amazing super power it turns me invisible when I get in it....like Harry Potter and his invisibility cloak. I get in it anywhere in public and poof I'm invisible. This would be a really cool trick if at times it weren't downright dangerous. 

I was out doing Christmas errands with my daughters and I was using my manual wheelchair. My youngest daughter was pushing me in the parking lot, there were no handicapped spots, many were taken by non handicapped people or everyone is suddenly forgetting to place their handicapped placards. Unfortunately it is common to see this especially closer to the holidays, another good one I see is leaving the handicapped person in the car so you can get things done without the nusence of the handicapped person slowing you down, because I'm sure they love being used for prime parking. 

Anyways on the way out of the store a full sized older SUV (a Chevy Blazer 1980's style) starts rapidly backing out of their parking spot, my daughter is trying to pull me quickly out of the way I start waving my arms in a desperate manner, he continues backing up, I know my daughter is not able to move me out of the way quickly enough at the speed this vehicle is reversing I start screaming hello, at this point the man is well out of the parking spot and should be changing to drive anyways. He is finally alerted to our presence by my screaming, my daughter said the passenger was just looking at us the whole time, why this woman did not alert the driver to our presence I have no idea. Another costumer in the parking lot is shaking his head and makes a remark on how he didn't think the man was going to stop either. I understand my wheelchair is lower than his vehicle, but I have two other pedestrians with me and he never even looked over his shoulder. I believe he was planning on driving in reverse to the main road rather than go the rest of the way down the parking lot. 

I become invisible in my wheelchair even when people look me right in the eye, they will still step right out in front of me. People will walk around me, partially over me, straight into me. I feel like I am just a speed bump while they are on their life saving mission to get whatever they need. I even had a man ram my chair with his shopping cart, he gave a quick, quiet sorry as he quickly walked away. I am sitting there in shock and pain because he rammed me good. 

I was always taught manners and there is a different level of respect that you extend depending on the recipient. Elderly and handicapped were always given a higher level of respect and assistance, you should naturally hold the door for them, always smile and look them in the eye. Respect and manners seem to be rapidly disappearing and I'm sad to see them go. 

Who's with me in bringing back manners, common curtesy and respect. I for one am going to be talking with my children about it more and making sure that what we have always taught them is actually being used in everyday settings. 

Thanks for stopping by I really apreciate you taking the time to check out my blog. Remember the best comlimemt is to share my blog with friends, hit the follow button and feel free to share. 

Jack Frost is nipping at my joints

I know winter storms are hitting a lot of areas hard recently. My area has not been hit as hard as many others, but we are hitting record lows (single digits) and have gotten snow and ice. This winter storm is really hard on my body. I always have heard people say "a storms coming I can feel it", now I know what they mean. 

I just had my infusion last Thursday and I feel like I haven't even had it. Thankfully the pain isn't constantly severe, but there are definitely moments where it really spikes and catches my breath, even brings a tear to my eye. I have constant pain that is the high end of moderate level. I have a high pain tolerance as I have said before, but this is really taking a tole on me. 

With a constant higher pain level, it really fatigues me and my brain. You get to the point where you can't think straight. I get very frustrated with not being able to think clearly. I forget things easily and often can't think of simple words that I have used almost every day of my life. 

When things get like this I can't keep up with what is normally simple everyday tasks. Emails stack up because I don't have the mindset to be able to respond. Phone calls get ignored and messages remain unanswered. I save any energy I have for my husband and kids, but even that is very scarce. 

I had to approach my Dr about increasing my pain medications because I just can't take it anymore. He was willing to increase my dosage, but only for 2 weeks rather than the month I am normally prescribed, so that means making another appointment while I am not doing well, not to mention the fact that we have so much else going on already. I start to feel overwhelmed with the calendar filling in so quickly, especially knowing that my energy level is so low and pain level is so high. 

I love this season and this time of year, I even love the snow as my area hardly ever gets it...but I am really ready for this winter storm to move on.  

I hope everyone is staying warm and is not being hit too hard by Jack Frost. Thanks again for stopping by and have a great day.