A smart body

To me a smart body is one who tells your brain when there is pain. Your body tells your brain that there is pain, which your brain takes and sends to you as 'ouch that hurts', which a smart person listens to and says I am in pain I need to seek medical attention.

Then there is my body. Hmm nothing going on here, keep on about your day with this broken bone, or this scalding burn happening.

Basically pain receptors are important. Please stop telling people with a low pain tolerance they are wimps, honestly their bodies are smart and know when to tell the person attached to them to let go of a hot object etc. My body is on constant vacation or something.

When I was a kid I broke my wrist. My high pain tolerance did tell me this hurts a bit. The tomboy tough kid in me told me to suck it up it's just a sprain. I played volleyball on that wrist, amongst many other things, for a week before my volleyball coach came to me and said "you are still babying that wrist when you serve maybe it's time to have it looked at". So I tell my Mum who takes me in and instantly feels like the worst child abuser ever because she let me go a week with a broken wrist without having it checked. Totally not my Mum's fault, I just have a high pain tolerance that paired with my stubborn side tells me I am fine and just ignore any signals my body sends and suck it up and act cool. OK side note I am really not cool, nor have I ever been. I mean come on I am a fair skinned freckle faced red head, in my school days that equaled kid to tease...not cool kid. As an adult my fair skin and red hair are envied so I'm good with it.

Stubborn me plus high pain tolerance me were working really well together one day when I had my lovely cast on my arm. I was making mac and cheese. Yep all by myself because I could. Now in all fairness you should know my Mum was home along with my best friend. Anyways I go to pour the boiling water through the strainer, again to be fair there were offers I believe from both to help me, my response "no I can do this myself"...I believe this may have been simultaneously done as the boiling water was being poured onto my cast, but to be fair to myself there may have been a few seconds in between.

Here is another thing to know about me I am obedient, the Dr told me not to get my cast wet I would do everything in my power to not get my cast wet. So of course the first thing in my mind is OM I just got my cast wet.

I did not feel pain. I felt pure panic. I got my cast wet.

So I am just standing there yelling MY CAST MY CAST. My smart mother wants to add more water to my cast, something about cooling burns, this is complete nonsense to me as my only thought is my cast is wet we must dry it. Now I have no recollection of who won that battle, I do have good scars  to remind me of the burns through my cast. I do remember the smell of the blistering skin, and seeing some blisters peeking out from under the cast. Signs that maybe I won, but I do know my Mum was a stern and stubborn woman so I'm sure the outcome was in her favor.

Now I could be a smart person and I tell you I wizened with age, but who am I kidding most of you know me I have only widened with age. Last summer I took my pup and me on a walk, it was a beautiful sunny warm day. Smart people know sun= very hot asphalt, people of the NW don't know sun...we take what we can get. I hate shoes; this is a very important piece to this story. So I am walking barefoot on hot asphalt and blistering my feet, but my dumb body is telling me nothing. So I keep walking. Now I should mention my Pup loves walking like the curb is a high wire, but this day he was walking on everyones grass, so pup was fine...no pups were hurt in the making of this story. Well I get home and realize somethings off with my feet. I look down to see blisters forming. Thankfully wise Mum taught me to cool a burn, and as there is no cast on my feet so I am good to soak them.

So to me a smart body tells me when there is pain. Your body feels pain for a reason. I envy smart bodies that tell the brain when there is pain....pain= danger which tells you stop doing what you are doing stupid.

There's a bit more about me for those who didn't know. Telling you all how silly I can be is hard.

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How do you know your pain is beyond RA

When you have a chronic pain disease like Rheumatoid Arthritis how do you know that the pain you are feeling is not "just RA", not that just RA is something to take lightly.  I have said before that I have a high pain tolerance. I think a smart body feels pain, ok feels an adequate amount of pain based on the severity of the cause....e.g. a broken bone should alert your brain to tell you this is painful something is wrong. There is a story behind this scenario, it is a true story I'll save for another post.

Anyways how do you know if your pain is beyond RA? I have pains that come up that are new pains, but often I figure oh a new joint has joined the RA symphony. (I feel pretty terms help me cope LOL)
There are times where I have this self debate of is this new pain RA or something else? Is this worth seeing my Dr about or will they just tell me it's RA and make me feel as though I have wasted their time?  When is my next Dr appointment? Can I wait until then and just bring it up at my regular appointment?

My left shoulder has been giving me a lot of pain which in my mind I know is beyond my normal. I have noticed I am babying it and not moving it through it's full range of motion, which raises other questions. Can I really not move it any further or are my pain signals really kicking in and telling it not to move anymore to prevent further damage? The fact that I am asking myself these questions is enough to know beyond a doubt I need this looked at. The fact that I do not have a smart body (see first paragraph) tells me a regular person would have went in a couple days after the pain first occurred. The fact that I am a month out and still debating this should tell me that I need to go in now.

So guess what I have decided to do....yep my regularly scheduled appointment is only three weeks out so I will wait and tell my Dr then. I have looked into Dr google and it says it's cancer so really I am good to wait right!? Totally kidding, well sort of we all know how often google says it's cancer. I really have researched this and have found the fixes are torture and prefer to wait. Totally not kidding here, but the first step they recommend is rest and ice, which I haven't done yet so I will start there and see what happens. If I don't see an improvement I will make an earlier appointment.

As a general note as to how to know if your pain is beyond RA...Is this pain a new pain? Is it in a joint? Does the pain demand attention over everything else? I feel that if it's a new pain it's worth telling your Dr. If the pain is not in your joint it is probably not a new joint joining the RA symphony, but either yes or no to this question is worth telling your Dr. If the pain demands attention over everything else again tell your Dr, if you feel it's urgent seek help now. Any pain is worth bringing up to your Dr, any symptom is worth bringing up to your Dr. To me the only choice is do you wait for a scheduled appointment or go in sooner. Please always listen to your body.

*Side note I do not recommend this action to anyone else. Please be smart and listen to your body know that every body is a smart body and is alerting you to a problem. Listen to your body and seek medical help. Remember I am not a Dr. This is not a medical advice blog, always talk to your Dr.

I am sure I could write a book on this subject, so I will stop here so I don't lose your attention.
Thanks again for stopping by.

Clutzy Day

Today was a clumsy day for me. There are some days when my grip is just way off. I can't seem to hold onto to anything for long sometimes I just can't hold it at all. This is common with Rheumatoid Arthritis. It happens for me the most when I have a lot of swelling, which I am dealing with today. 

It started when I was trying to bag up veggies and I kept dropping some of the green beans. Not that big of a deal because my dogs love vegetables so I had the cleanup crew at my feet. Next was a bowl, this was a good hard drop but thankfully I have corelle dishes bought for weight and the added benefit of hard to break. No dishes or humans were injured during this episode lol. 

Next was a water bottle, of course the kid was off at the time! I don't know how it missed the three electronic devices I had right by it. Pure luck only a chord got a bit wet, oh and my ipad case....always get a case. 

 

Once a week I refill my weekly pill dispenser. I always do this on Sundays. I often drop my pills as I am trying to fill this. I have trained my dogs very thoroughly on the "leave it" command. My dogs will not touch anything if I tell them to leave it, to me this is the most important command you can teach your dog as it can save their life. I was scared of filling my dispenser because I had already dropped so much. I actually didn't drop any pills, I'm not sure how it happened but am so glad. 

Tomorrow I have to drive for about 4 hours. Thankfully this will be broken up, 2 hours to get where I am going then two hours to get back. I haven't taken this long of a ride or drive since my RA has been so active, so I will probably have to make multiple stops to stretch and get my joints moving. I know it will be pretty painful and difficult to do, but I'm hoping it won't be too bad, it will be a good test as this summer we will have some even longer trips. I do have some helpful hints for traveling with RA that I will share in another post soon. It will be a good reminder for me too. 

Thank you again for stopping by. Hope everyone is having a great day. 

Archery

Archery is something I enjoyed doing as a kid. My dad and I would go out in the yard and shoot at a large hay bale and I did some archery in girl scouts, so not a pro just a fun hobby I could share with my dad. Recently my Hubby and my girls have been taking some archery classes, I was unable to join them because my Rheumatoid Arthritis has been so active. My oldest daughter just turned 18 and for her birthday we went to the archery range. I decided to see if I could use her lighter bow and shoot from my wheelchair.

The range was empty except for us and one other guy, who happened to also be in a wheelchair. Turns out he has been doing archery since he was a young child, he has cerebral palsy and believe it or not Rheumatoid Arthritis. I had the best teacher I could have there and available to help me alone, like a private lesson. He was giving me great pointers and telling me to not get frustrated as it was like having to learn the sport all over again because everything is so different sitting in a chair. He happens to teach archery too and often has the higher skilled archers sit on a stool because it is more difficult to do.

I got some great pointers from him and was able to hit the target several times. We had a great time, we didn't stay long as we had a full day of birthday fun, which was good as I think I would have pushed myself too much because I was enjoying it. The next day I did have some extra pain and swelling, but after doing so much for her special day it was all worth it. I think I will be going more often as it will be a fun family sport and will help keep some of my joints moving and build muscles to help protect joints too.

There are always still things I can do, sometimes I just have to learn a new way to do it. To get my pain pills I have to fill out this form on all the things I can no longer do because of pain and how it affects my quality of life and enjoyment of life. Honestly I don't think about it that way, why would I want to focus on what I can no longer do. That form is depressing and I usually fill it out on auto pilot, but really why do we have to focus on the negative. I love my life...I have a wonderful family my life is filled with love and laughter, we do things together and have a lot of fun doing them. Even if we are just at home watching movies together because my RA is active and I can't do as much, we still have a great time. Pain or Rheumatoid Arthritis do not affect my enjoyment of life because I refuse to let it. I will always enjoy my life and find quality in it!

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Humidity is my kryptonite

Humidity will get me every time. I am swollen and painful today in places I have never even felt before. I can feel misaligned joints in my throat even. My ribs hurt, it literally hurts to breath. I am stuck in bed. I got up to use the bathroom and my joints are so swollen I wobbled my way there like jello, which is dangerous and scary, risk of falls etc. 

This humidity didn't come as a surprise, I knew we were expecting some heavy rains and in my area that usually means humidity, however I was not expecting 100% humidity. I don't live on the east coast, where did this come from! So I wasn't prepared. If I had known I would have had my wheelchair close, but instead it was clear across the house from me. So I had to stay in bed until my daughters came home from school and could bring me my wheelchair. I do have neighbors I could have called for help if I needed anything badly enough, but today I was ok to wait. 

My brain doesn't click as well as it should when my pain is high. My thoughts are scattered and I jump from one subject to another. It's frustrating for me, as I'm sure it is for those I try to communicate with. 

I don't like crying, I'm not saying there is a weakness to crying I just don't like it. It used to take a lot for me to cry, but good books or a good movie will get me every time. Well sometimes the pain gets to me and I just need a "moment" as I call them to cry it out so I can get the emotion out and move on to whatever needs to be done. I have a crying place, I cry in the shower in the hopes that the sound of the water will soften the sound. I do this in an attempt to not alarm my family, well today my daughter caught me. It was hard I don't like them to hear or see me like that. My husband always wants me to let them see, but something in me still makes me want to be the strong Mom or something. 

Today was tougher than most, I am hoping this crazy weather moves on soon. Until then I'll make sure my chair is close and catch up on some netflix. What in the world would I do without Netflix and a good book. 

I hope everyone else is enjoying the winter during the calendar spring. Thanks for stopping by. 

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.