Infusion day

I started this at the beginning of the month, but never got a chance to finish. Between being knocked flat from my infusion then overdoing it after having a couple of good days etc etc, but I'm here now finishing my post. 

I had my infusion at the beginning of the month. I take two major medication an infusion once a month and an injection once a week, then there are several medications to counter the side effects of these because they are chemos, plus pain management medications and supplements.This was the first time I was actually nervous that I had not drank enough water in the few days leading up to my infusion. I am a wateraholic I drink close to 100 ounces a day, but I had been so fevered and feeling so poorly I was barely drinking or eating anything. I know how hard it is to get a good vein when someone is not hydrated well enough so I was very nervous, which of course doesn't help find a vein either. 

Johnathan, one of my regular nurses was looking at my veins and was surprised to see they weren't as plump as normal, but was sure he could get the vein with only one poke still. Thank heavens he was right. He and I always chat a lot during my infusion, he is younger than me, but we are much closer in age than most of the other patients in there. I think most younger patients must choose injections or something, but if you looked in on my infusion room you might believe the horrible myth that arthritis is an old persons disease. The conversation of the day of course was water consumption and how important hydration is. He knows I am usually really good on water so we were laughing a bit at my expense. He was telling me about a patient that had shared with him he had been poked 15 times in one sitting because they couldn't find a vein, there is no way I would sit there through that, please just go home and drink some water and come back! 

I did have an experience of a nurse who is known for always getting peoples veins with only one poke, but the techniques she uses to achieve this status are nothing shirt of torture. It was a rare occasion for me, honestly I hope once in a lifetime, the tube just wouldn't thread in my vein. So she kept digging and digging to get it to thread, I finally said please just try somewhere else I couldn't take anymore. I had a huge bruise and was very sensitive for a while, the bruise seems to have stuck around like a dark brown scar. Infusions are not always plesant...ok honestly they are never plesant. 

I do notice a big difference between the men and women in my infusion room. For the first time I had all men in the infusion room with me. I was noticing how quiet the room was and realized part of the reason was there was not the normal chatty women who will strike a conversation up about anything. The other thing I noticed is the men seem almost stoic to me, these were all older gentleman, and one was sitting there no book, no phone, no crosswork, suduko, or word search puzzle, no magazine, nothing and was just sitting there quietly the entire time I was there. He didn't recline in the chair to be comfortable he didn't really even lean into the chair he just sat their looking stoic to me. I wondered if there were more to our infusion room would he have made the choice to have some form of entertainment? Is this his first treatment and he didn't know to bring anything. I should also say he was on a medication that takes 2 1/2 hours to infuse. It was just a large difference from the norm for me. 

I know that our medications are horribly expensive and I know that the drug companies are making a great profit from us, I sure wish they would use some of their profit to make our infusion rooms more plesant. They put out a lot in marketing to get us all to take their drugs, you know those horrible commercials where they show if you take their medication you'll be able to go play sports, squeeze fresh orange juice, or play tug of war with your dog. I'm here to tell you the majority of us will never do these things again, the medications help us live half of the life we used to have and I am thankful for that, but I would really like more honesty in their ads...ok maybe I should save that for another post I could go on and on. 

What I would love to see is some of that marketing money or the profit to come back to the patient in the way of sprucing up our infusion rooms. I don't think I have ever seen a fantastic infusion room for an arthritis patient unless they share it with cancer patients. Mine is so drab and boring, no pictures on the wall nothing cheery about it, old school IV poles with no monitors on them only the old dials to get the correct drip rate. No entertainment except for a book exchange shelf they finally got us. No snacks or blankets, no family allowed in with us. The last part is something that bothers me the most and is not true of all arthritis patient infusion rooms, but mine allows no one to be in there with us. No one to comfort us, no one to just be there with us. Upgrading to an infusion is a scary thing, going in for an infusion is a scary thing. My husband comes to every appointment with me and sits in the waiting room and just waits for me, in an uncomfortable chair and he never complains. He is so amazing, heck last year I had to schedule my infusion on his birthday and he never complained he just waited patiently for me to be done so he can drive me home safely and take care of me after I'm done. Sorry ladies he's taken, I am the luckiest woman in the world to have him, even luckier that he chose me. I really can't thank him enough for all he does for me, my girls too I am so blessed. 

As a last thought I don't think that a television in our infusion room would be a good idea, but how much would it cost to have a couple of portable DVD players and a small selection of DVDs, more up to date and more interesting magazines, some puzzle books and please a few nature scenes in frames on the wall. 

Thanks for taking the time to stop by. Have a great day. 

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.

I'm lucky

Today is my 18th anniversary. At the age of 20 I met this amazing man, he made me feel beautiful, he made me realize what my potential was and helped me achieve it. My husband and I met through a mutual friend, and it was instantaneous love at first sight. It didn't take us long to realize we were made for each other so we married very quickly, because when you meet your soul mate you don't want to waist another second apart.

Many didn't think we could do it or thought we wouldn't last. It is nice to be here 18 years later and prove them all wrong. It still amazes me how much stronger our feelings have grown and how much closer we have grown together. I was young when we wed he was a bit older and I feel that we did a lot of growing together, both as individuals and as a couple. Our journey has been amazing. 

Now that my Rheumatoid Arthritis is active and rapidly progressing my husband has had to help me out a lot. We are living the in sickness part of our vows and he is proving all over again how lucky I am.  

He has done a lot of basic things like cooking more, having the girls help with that and cleaning. He put lever handles on all our doors (I highly recommend anyone with RA to do this). He has bought techie toys like iPad and iPhone to make things easier on my hands. He worked with the insurance to get me a manual and a snazzy electric wheelchair. The list goes on and on and I will try to make a blog about some easy assistive devices another day. 

I want to take a moment to publicly thank him here on my blog and to tell him thank you for loving me. I hope everyone has a great day...I know I will :)

Continuation of there is No Cure

If there is no cure for Rheumatoid Arthritis then why can we search and find so many pages that tell us that people are being cured of RA?

There are several reasons behind this problem that we encounter and unfortunately there is no way to fix all of them. But we do have an option The International Foundation For Autoimmune Arthritis has a page where we can report any article, advertisement, column or broadcast that is providing false or misleading information about Autoimmune Arthritis I will attach the link at the end of this page. They have corrected pages already thanks to people like us sending them in.

I will talk about a few different reasons that we find so many pages with claims of cures or remission.

1 The biggest problem and probably the easiest one for others to make is people referring to Rheumatoid Arthritis when clearly they mean Osteoarthritis. Now this is a clear sign for those of us living with the disease to stay away from any recommendations the page makes we know they have no knowledge or education in our disease. The hard part is people not living with our disease come across things like this and believe it as truth. Dr Oz is a big one that so many people believe he is an expert on everything and he has made exactly this mistake (he did correct it in a short sentence on his page) but the people watching that show now believe obesity can cause Rheumatoid Arthritis.

2 With that I will lead straight into #2 the sentence I just wrote Obesity can cause Rheumatoid Arthritis, which again is incorrect obesity can lead to osteoarthritis, anyways that could possibly now come up out of context if someone were to directly search those exact words. To many people that is enough they don't go to the page to read the whole story to realize that is not what was truly being said.  I think this happens a lot more than we realize. People don't have a lot of time they skim they find what they think are their answers and then they share and share and share again. Seeing the pattern yet?

3 This is the one that hurts me the most because it has to do with lying. I hate lying I always have as a child my stomach would get so upset when I knew someone who had told a lie. I have never been able to lie, it's just not part of who I am. I am a person with a really big soft heart and Lies really hurt my heart. So here it is #3 Salesmen are being paid to research diseases and post how it cured their ailment and post often. They want their product to get the most hits with search engines so they make up consumer names and stories and boost their own product. 

4 This is something my rheumatologist talked to me about because I asked why do we see so many claims of cures and remission with internet products. She said that there are many Drs who diagnose patience with RA without adequate blood tests etc and that patient may not have had RA to begin with, sadly this happens a lot. Then the misdiagnosed patient takes some supplement and wham they're cured! Well of course if they never had it to begin with. I'm not saying they didn't have something wrong with them, and I'm not saying that the supplement they used didn't make them feel better, I will say I am happy for them that they found something and got better. The unfortunate part is that now they go around stating that they cured their RA that they most likely never had. 

5 This is my favorite because it reminds me remission is sometimes possible, though not the norm it is sometimes possible. I need these small pieces of hope to keep me going sometimes. People who go into remission because sometimes people are lucky that way and before they went into this remission they tried let's say gluten free; so because these simultaneously happened they figure they were cured. They go all over and shout it from the rooftops, I mean wouldn't you if you thought you had something that could really help us all. They get on all the chat groups and tell everyone how great they feel and how you can do it too. But it is Rheumatoid Arthritis and the other shoe has to drop right...I have had a person who came back to a page I frequent and apologize profusely she went gluten free and found she was feeling great cured of Rheumatoid Arthritis and had ranted to everyone you must try it it really works etc. well unfortunately for her her RA flared up again with a vengeance, while she was still living a gluten free life. So the poor thing had to come back to her groups with a little egg on her face, but I feel she is an amazing brave woman for coming back and letting us know she made a mistake and she was sorry, kudos to you I'm proud to have you in our mixed circles. I have also seen others who have made the same mistake and have returned to the groups to let us know they were mistaken.

I am sure there are other ways these postings come about and become so popular that we worry all anyone will ever know is how rum soaked raisins cure your arthritis. We worry the lies will outnumber the truth. So what we need to do is RAISE AWARENESS...SPEAK THE TRUTH...talk to people and let them know what it's really like, what this disease Rheumatoid Arthritis really is: daily fevers, flu like symptoms, fatigue (like you have never known), pain in every joint in your body, headaches, hearing loss (yes there's a joint in there too), organ damage from swelling, heart disease, rheumatoid lung, the list goes on and on even death.

Here is the link to report misinformation to IFAA (International Foundation for Autoimmune Arthritis)
http://www.ifautoimmunearthritis.org/Awareness_Hotline.html

Thank you for visiting my page. If you want to stick around you can follow my blog, sign up to get emails when a new post is written, and now I have started a facebook page so look for me RA_Gal. Have a great day everyone.