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. 

I am angry!

That's right I'm going to say it. I am angry, I'm mad, I'm pissed off. I want more. I want my life back. I want my medications to work. I want better for the other sufferers, especially for the kids. 

I still am so hopeful every time I take my meds, or try a new one, that this one will work, this is the one. Then it ends up not working not being the one. Yes biologics are great and they work so well for so many, but what about those of us that fall through the cracks? Those of us that aren't seeing the benefits of the biologics they show in the damn commercials. That's right I'm calling them out too, how many of us can actually squeeze an orange, play golf, braid our children's hair? Show us that your meds can help us get out of bed, stay awake for the entire day, do something fun with our family. Also why do none of these meds mention that they will prevent death from RA? They only list that their meds may kill you too so what's the draw? The hope for a better life, the hope that this will be the one. The miracle drug that will give me my life back. That will take away the fevers, the fatigue and the pain. I list these symptoms only and in this order because these are my hardest hurdles and this is the order of them for me starting with the hardest. 

My fevers are the worst. I have them almost everyday, but everyone's RA is a little bit different. Many RA sufferers don't have prominent or persistent fevers. Many would list pain first, I have a high pain tollerance, which is not always a good thing, and I don't think a lower pain tollerance is a sign of weakness...to me it's a sign of a good brain that communicates well with the rest of the body. People with lower pain tollerance know when not to do something stupid because their body tells them hey, that hurts. For instance a person with a lower pain tollerance would know their wrist was broken and probably not spike and serve a volleyball multiple times throughout an entire week with said broken wrist, they would also probably know when the pavement is too hot to walk on barefoot before coming home and seeing large blisters appear. These are just a couple of random examples that may or may not have happened to me. 

Even with my level of pain tollerance I get fed up. I breakdown. I can't take this amount of pain non stop for this long without breaking down. I want better medications, I want more choices of medications that actually work, and dammit I want a cure! 

My latest infusion has not been working for me yet. I have been taking prednisone like it's candy. The funny thing is I still expect to take prednisone and be able to do it all, to actually get some things done, be able to function like a normal person. In reality all it does is allow me to survive another day, I wake up, and I can shower and feed myself, but unfortunately usually not much more than that. That's another thing that makes me angry, I expect more from it. I want more from it, and why do we balloon up in weight and get the lovely moon face, while athletes on steroids gain muscle and speed...what am I doing wrong?

Today, for a moment, I am angry. I will allow myself this moment, but tomorrow I will wake up and I will be thankful for all that I have. On Friday I will wake up and put all of my positive energy into knowing that my infusion will work this time, that we will be able to up the amount and that at the higher dosing, it will work. 

I am an extremely positive person, but sometimes I have to know that it's ok to be angry.

Thanks again for stopping by and remember the best compliment is to share it. 

Life picked up its pace, I'm limping behind yelling "wait for me!"

I apologize for how long it's been since I've made a post, my husband had recent knee surgery and I have been nursing him to get him back on his feet and chasing after me. 

While recovering he had a gallbladder attack and we spent five hours in the emergency room only to find out he needs surgery. I have to say I like being the patient better, at least when the pain kicks in. Seeing my husband go through that and not being able to help him broke my heart, he was so sick and in so much pain. I would take that pain from him and give it to myself if I could. I hope we get the surgery very soon! The Dr in the ER wanted to refer him to a surgeon herself but our insurance has referrals and steps we need to meet before we can be seen. Needless to say it's been a busy few weeks here at home.

This is when I go into what I call "chipmunk" mode. I know I have a lot coming up to take care of him and make it to all his appts with him...not to meantion sit through a surgery. Stress and energy will be spent, which means I need to be in chipmunk mode and store up for the hard days coming, I just store up energy or (spoons) not nuts. 

I start to take anything off my schedule that is not urgent, I hate to cancel plans but it's a survival mode and it has to be done. My family comes first, my health comes second everything else can wait. I cut back on errands, thankfully my daughters can pitch in and help. My emails start to really build up, I can't spend my energy on responding so those will have to wait. No social media because it takes too much time, we all know we get sucked in and spend way longer on there than we intended. I don't make phone calls or texts. Any plans will be broken. Any phone calls that need to be returned will most likely have to wait until a while after surgery is done. 

There is a lot of stress with taking care of  loved ones who are sick. There is also other stress going on in our life. I won't hash it out on here, but anytime anything is brought up about it my heart starts racing and my stomach gets upset and so I keep just trying to not talk about it so I don't lose energy on it...it is something where a decision can be made later like after all this surgery stuff is over. The hard part is everyone knows it has been hard for us so they want to see how we are doing with it all, but right now I just can't even think about it. 

My husband and I have joked about our sudden role reversals. Normally he is taking care of me, now I'm taking care of him. He knows how hard all this is on me and my RA is being a bully and kicking me while I'm down. I am a nurturer so I love taking care of him and I admit to spoiling him, but it is still very hard on my RA. 

Things have not been going as well as I had hoped they would with the actemra. I have new joint damage and a lot of new rheumatoid nodules. Thankfully they are all on my feet so they're not seen by everyone. Some of you may not know what a rheumatoid nodule is so here's a definition for you...A rheumatoid nodule is a local swelling or tissue lump, usually rather firm to touch, like an unripe fruit, which occurs almost exclusively in association with rheumatoid arthritis. 

I told my rheumatologist and she wants to look into upping the actemra dose as I am on the lower end of the dosage scale right now. My Rheumatologist commented this was the worst she has seen me. She is determined to help me and was earnestly sad that my miracle medicine was not performing any miracles yet. I just love my rheumy. 

So things are going to be tough for a little while around here. I will be using all my stored up energy and using some prednisone power to keep me going....prednisone is a steroid commonly prescribed to RA patients to help control the swelling throughout your body. It has a lot of nasty effects so I only use it when I really need the extra boost. I think I will actually reach out to friends to maybe bring by a dinner to help out. People always offer, I really need to take them up on it. DON'T BE AFRAID TO ASK FOR HELP. If you learn anything from this post it is exactly that, as I am the worst about asking for help. 

I hope everyone is doing well. Please remember to wash your hands often as it is cold and flu season and please keep sick children at home, so many kids are immune suppressed for many diseases not just JRA. We (the immune suppressed) can become seriously ill from something that a normal person can kick in a couple days. 

Have a great day and as always, thank you for stopping by. Hope to see you again soon, and if you enjoyed please share my blog with your friends! It's the best compliment you can give a blogger. 

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.