The sexier side of RA

I was talking to a friend today and I had to laugh at the stuff that we all talk about like its normal for everyone. That is the great thing about chat rooms that are specifically for Rheumatoid Arthritis or Autoimmune Arthritis, they're safe and everyone is automatic friends, just like being kids again. Remember how easy it was to make a new friend on the playground, you're both on the swings so you're instant friends. It's the same way in our chat rooms, we all know we have RA in common so we know that we are understood and safe. 

I just had to take a moment and laugh about how our chat rooms may sound to an outsider. I mean when you really think about it RA is down right sexy. Let me give you a taste of conversations that are a common occurrence in our "safe rooms"....

First remember we take chemos that in itself is just pure sexiness, the hair loss, the vomiting, bowel movements or the lack there of are not outside of our comfort zone of acceptable conversation, anything and everything goes in our rooms. Our conversations would make most people uncomfortable and would probably not be appropriate in normal conversations. 

Then the sexy joint damage that the disease itself causes. You aren't sexy until your toes or fingers cross without you trying, heck most of the time we barely notice when a new joint is pointing off in some wrong direction. My second toe crosses over my big toe now on both feet, it's rather funny when I paint my toe nails and find my toes stuck together as they caught in the drying paint. Rheumatoid nodules are not as common of an occurrence with RA but there are those lucky sexy warriors like me that get these ever so attractive lumps under our skin. Speaking of lumps, rashes and acne are very common from both our diseases and the medications to treat them. 

Infusions and injections are tossed around as if they are an everyday experience for everyone. How casually we toss medical terms around would lead some to believe we have a career in medicine, which we do, we're just on the other side of the stethoscope.  I have had Drs ask me if I am in the medical career field, my answer is no just a professional patient. Fighting and treating this disease is a full time job or a career, in a field I'm sure non of us would have chosen. I have met some of the greatest people in my un-chosen field though and have made some pretty amazing lifelong friends. Unfortunetly with a disease like this we sometimes lose those friends, it's a tough road. 

As you can see I find humor is helpful. I haven't been able to do much of anything lately as my RA is very active. I need to speak to my Dr about what we do from here, steady flare and a bunch of new nodules, which is another sign of disease activity. So I'm just sitting around getting sexier by the minute. 

I have to say the fact that we talk about chemos like its nothing just shows me what strong warriors we all are. Have you really stopped to think about what we do to keep going? Pat yourselves on the back because dammit we are strong, we are amazing! We are fighters! 

Please forgive me if this is sporadic and chaotic, my brain doesn't flow well on pain, it tends to jump all over the place....look a pretty bird, what was I saying...I think you know what I mean. Forgive me for my flaws, I am human, and as always thanks for taking the time to stop by, I know what a valuable commodity time is and I'm glad you chose to spend some of it with me. 

Personal Bubble

I'm sure you have heard the term personal bubble. Some people call it their personal space or personal space bubble. Urban dictionary defines it as the area around a person, aprox. 1 - 2 feet (depending on culture), that you should not enter without their (vebal or non-verbal) permission to do so.  Everyone has one, some people have a wide spread bubble and others are smaller. 

There is a funny thing about personal bubbles that I have learned, the personal bubble seems to be around a persons face. Meaning that if you are not directly in front of their face their personal bubble seems to get smaller or almost non existent. You could try an experiment with a friend and stand face to face and see how close you are comfortable standing keep inching closer and closer. Then try the same experiment but start by standing back to back, I am sure that you will end up standing much closer before you feel uncomfortable. Which if you think about it makes a lot of sense. 

My problem is when I am using a wheelchair I am no longer at face level with most people. Which means they are perfectly comfortable standing squarely in my personal bubble. They will comfortably stand with their rear in my face, while I am twitching and sweating trying to keep myself from poking them to remind them that I am there, they are even comfortable with facing me and because they are looking over me they still feel comfortable, meanwhile I am looking into someone's private area, because its maybe 6 inches from my face. 

The worst area that people are perfectly comfortable popping the personal bubble is in elevators. I will still never understand why people must constantly test the max weight of these dangling boxes of metal. Is it really that hard to see that it's full and wait for the next? Why must we always seem to be trying to break the world record of how many bodies we can cram into an elevator? 

Anyways as I was saying, people are more comfortable within another persons bubble on an elevator. Which when I am using my wheelchair means these strangers would be perfectly happy to sit in my lap just to make this exact elevator, gotta beat that world record right. I am not comfortable enough to say something to these people. I am sure that they would be embarrassed if I actually pointed out what my view of them is and how close that part of them is to my face. I know I would be embarrassed if it were me. 

This is a rather funny blog, but really I would like to remind people of the personal space of others. I know that it happens to others, like children, and shorter people, so please be aware and courteous of everyone's personal space bubble. 

Hmm does the tallest person in the world have a really small personal bubble because no one is ever at their eye level? 

Thanks for stopping by again. Sorry it's been a while I have been in a nasty flare. 

Honestly, sometimes I'm scared

This is me being transparent opening myself up truly showing a side of me that doesn't come often, but when it comes I feel like I'm sinking there is no light at the end of the tunnel this is it for the rest of my life. It's only downhill from here.

The other night while I was counting out my weekly medications, I have a weekly container for my pills that separates them into each day of the week. last night while counting the pills and separating them into my container I dropped two pills onto the tile floor. I almost always drop one we have tile floor in our bathroom and my dropping pills has become almost a joke between my husband and I so I hear from our bedroom "dropped one", then the second pill dropped, which in the scheme of things is nothing, but for me that night that was it, two was too many. My hands were not working well and in all honesty I should have asked for help, but I am to stubborn for that. I used a shelf to support me while I bent down to retrieve my dropped pills, the shelf was missing a bracket and tipped forward and the contents spilled over. I am lucky I didn't hurt myself, but I did hurt a handmade figurine my husband had gotten while on a Humanitarian trip in Panama...that was it I lost it! 

My husband was worried about me and was trying to come in and help, he was worried about the broken ceramic piece and whether I had in fact hurt myself. He was trying to open the door to the bathroom which was blocked with debris. I started crying and told him I'm ok please just wait until I pick it up so you can actually get in. I cleared up the broken pieces and started letting my mind go too far down the negative path, the path I hate, the path I normally avoid at all costs, but sometimes, just sometimes I can't be that strong anymore, sometimes I have to cry it out....sometimes I am scared. I started thinking about my independence that is slowly slipping away from me, all the things I couldn't do anymore, all the times I have to ask for help, what about when the disease progresses more, all the stuff my husband has to take over now that I can no longer do, what if something happens to him, I am not comfortable enough for anyone else to help me, I'm too strong willed to ask someone else to help me. What if I just can't be independent anymore?

I went and laid down and just cried for a while, my husband came to my side and held my hand and just waited for me to be done. Then he had me look at him, btw he has amazing brown eyes and he told me how much he loves me and how he will always be here for me, that he loves taking care of me, that I am worth it and I am amazing and strong and how he is the lucky one. Wow! I'm not sure if he is the lucky one or not, but I know that I am lucky, that I have an amazing husband that loves me and that alone makes me want to fight this disease.

These are all very real possibilities with this disease, this could be my future. One day I may not be able to be as independent as I am now, one day I may not be able to take care of myself.....and honestly that scares me, but I know that my husband will be there every step of the way. Whether it's sitting in the waiting room during my infusion or holding my hand while I have a good cry, but he will be there with a patient smile and a heart full of love.

On a happier closing note, because I am a very positive person. I can still do so much for myself and these really bad days that suck me into a black hole of sorrow and lets be honest self pity are few and far between. Today will be a good day, maybe not a great day, but a good day. My husband will make me smile, because he always does or my kids will or even the dogs, there is so much to be happy and thankful for, so today will be a good day.

I hope everyone has a good day. Thanks again for stopping by. 

Assistive Devices

Lets talk about Assistive devices. What really helps and what do I recommend?

First know I am a very stubborn person so none of these were easy. My husband lovingly coaxes me into the changes I need to make to stay as independent as I can. Ok lovingly coaxing is very hard to achieve with someone as completely stubborn and thick headed as I am, kudos to my husband again he is such a loving and patient man. I am sure there have been times when he has wanted to knock me upside the head for doing things the hard way just to prove I can, I must admit I do pay for my stubborn moments later, but change is hard for everyone right?!?

First and foremost get a handicapped placard for your vehicle, this is the tag that allows you to legally park in a handicapped spot. This is hard to admit you need, even if you don't feel you need it yet get it now and keep it in your vehicle for one of the days where you walk into a store strong and by the end you're really wishing someone could pull your car straight into the store...or better yet just magically transport you home. These are the days that you will be glad you got yourself a placard. I had read early in my RA to get one and I wish I knew who originally suggested it so I could thank them. So let me just say here thank you for the wonderful recommendation it has saved me on many occasions. 

The next thing I highly recommend is getting assistive utensils. I really like the rubber thick handles. These are such an easy replacement, but it really saves the fatigue on your hands. Also treat yourself to a good chef quality knife set. I personally like cutco, but there are many others that are good, spend the extra money to really get a great set. This will save you sawing your food or applying unneeded pressure on your joints using a dull knife.

Another everyday item we can change that will really save our hands is lever door handles. Twisting a door knob is hard on so many joints in our hand, wrist elbow and even all the way up to your shoulder. This is also a great way to save yourself the embarrassment of getting stuck in a bathroom because you can't turn the door knob, true story...more than once. Moving on...

Similar to door knobs are sink and shower fixtures. Some are the twist knob style, these are also hard on the small joints in our hands. There are so many varieties for changing this out go to a variety store where you can actually test the handle and see what works for you. Stores like home depot and lowes are not good places to test these as they are usually fixed and do not move, also many of them are out of reach. I'm not saying you can't buy them from these stores if the price is right, just warning you that you can't test the merchandise as well there.

Change things in your kitchen. Make sure you have the things you use the most in the easiest spot for you to access, even if it seems backwards to others. I have also changed out my dishes to Corell, these are light weight and hard to break. How many times have you lost your grip and lost your dish because of it?  I lost a few dishes before making the switch. Get a good mat to stand on one that supports and has some give so it will save you fatigue on your joints. This is something I still need to get myself.

Scissors, get a good pair with the spring loaded action I recommend Fiskers soft touch. This one doesn't fit well in any category because scissors are used for so much. I also got spring loaded garden sheers for gardening, which doesn't happen as much lately. I did get one of those weed pullers on a pole to try to help, mine was a poor choice it doesn't extend so it's just at the right length to be really hard on my back. I recommend looking for one than can extend to save the strain on your back, if you choose the right fit for you I am sure this could be a very helpful tool.

Handicapped toilet....wow this one has saved me from some embarrassing moments. Ever have your joints not work and you just can't stand up? Save yourself the embarrassment of having that happened while your pants are around your ankles and get a handicapped toilet. Which also brings up my previous post http://ra-gal.blogspot.com/2013/08/warning-potty-talkit-handicapped-stall.html if you haven't read it yet I spoke of people misusing the handicapped stall. Please save us the embarrassment of calling out for help and don't use the handicapped stall if others are open.

Other things I did were like getting an iPhone for the touch screen capability, this was when there weren't other touch phone options, so I think any touch screen is a good choice to help your hands. My hubby also convinced me I needed an iPad for my hands, he often does things like this to validate his want of a new techie toy, my husband is a big techie junkie. I have to admit he was right with this one the iPad has been great for me.

The last one I will mention is a push button start vehicle. They are a lot more common now, of course not all of us can afford a new car to change this, but if you are shopping for a new vehicle put this on your list as must have. Turning a key was too hard on my hands and wrists, a push button start is helping me keep my independence longer. I have never been a fan of leather seats...too cold or too hot and you stick to them, but I have now realized how easily I slide into my seat with leather seats. The strain of the swivel in on my hips is now gone, I was looking into the lazy susan type device that helps you swivel into your car, but now with leather seats it is no longer needed. So I now love leather seats, I still have the too hot in the sun problem, but mine do heat up with the push of a button another feature that is fantastic for the hips. The other thing I looked for is a good height one that I didn't fall down into, or climb up into, it's right at a natural sit position for me. I also got touch screen stereo with navigation and blue tooth the touch screen is easier on hands than turn dials for volume control etc. The biggest reason for my car upgrade was my wheelchair didn't fit in my compact prius so I had to upgrade...I still miss my prius, but I did stick with Toyota and got a Rav4. It is really a great rig and I am sure I will slowly fall in love with it, but I am a small car personality so it was hard to say goodbye to my prius. These are some things that I would look for if you are in the market for a new vehicle. The Rav4 is a great choice for me make sure to find yours.

Thanks again for stopping by hope to see you again soon.