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. 

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. 

There is no cure, but thank you

I am not sure if this happens to people with other diseases or if for some reason Rheumatoid Arthritis is really targeted. I run across so many people that have no idea what this disease is and assume its osteoarthritis, but then there's the others....

The well meaning I have a friend who has a 7th cousin twice removed who used rum soaked raisin and cured their RA, or honey and cinnamon, cherry juice, losing weight, cutting out sugar, gluten free, magnets, ginger, green tea etc etc.... 

Do people diagnosed with diabetes get random people or even friends and family telling them cut out sugar or change your diet and you will be cured. Or how about people with cancer are they told to go gluten free to cure their cancer? I don't think so...why are we so targeted? (On a side note: My Mum passed from Breast Cancer and I never recall anyone telling her crazy cures like these, my Dad was diabetic and I never heard anyone but his Dr discuss his diet with him, so I'm not using these as suggestions without some knowledge about them and am definitely not trying to offend anyone). 

We all have someone who has suddenly become an expert that has tried to cure us with snake venom, or bee stings right. They know someone who knows someone who cured themselves or they read it on the Internet because everything you read on the Internet is true right. 

I'm here to tell you I have sadly tried some of these things. I mean some of them really sound like there is truth to them right, experts back it the web page says so. 

Lets talk about the stuff being sold, special "natural" supplements, vitamins etc...if you really think something sounds great first realize people are paid to promote these products. There are people who get paid just to go out and promote a product on websites. If there are experts listed by name who promote the product do a search on them. What can you find about them? Do they actually promote that product on their professional page? Search the products reviews (not just on their page), check the better business bureau, WOT (web of trust) etc.

If you still feel this product seems legit ask your Dr. Please always ask your Dr before trying anything even if its promoted as natural, even if it is natural, even if others with RA are telling you it works for them....ASK YOUR DOCTOR. 

I so often run across well meaning people suggesting dangerous supplements on RA chat groups and help pages. Always alway always ask your doctor. 

I have tried the gluten free diet and an elimination diet to see if there are any foods that trigger or flare my RA...I am sad to say after the grueling process I still have Rheumatoid Arthritis...I was not cured by changing my diet. On the other hand I do believe some people find some relief by changing their diet and eating healthier. I did make some changes in my own diet and am eating cleaner and healthier, but again non of this has cured my Rheumatoid Arthritis, I have not accomplished remission with these changes, honestly I can't even say that any of this reduced my pain or inflammation, but I do feel healthier as a whole for making these changes. I feel each individual needs to find what works best for them. 

The biggest thing I wanted to help was my fatigue level and I actually did find something that helps a little and it is exactly the opposite of what everyone is trying to tell us to do....Carbs lots of carbs and gluten help my energy, but I'm not talking about boxed pastas. I have a local bread shop that uses no preservatives and all natural ingredients and healthy grains in their breads and I find after eating the bread I have increased energy, and if I eat it on a regular basis I feel a difference. 

Again what works for me might not work for you, every person with Rheumatoid Arthritis is different, that's why this disease is so hard to treat. Listen to your body and your Doctor. 

It's the handicapped stall not the pooping stall

Alright it has to be said...It's the handicapped stall not the pooping stall.

There's a reason it's a handicapped stall. The toilet sits higher for ease on knees and hips and the bars are there to assist us in getting up safely and in transferring from a wheelchair. The stall is bigger to fit our wheelchairs, walkers or other assistive devices. We the differently abled (my new word for handicapped) need these stalls to be able to function independently. We do not want to have to ask for assistance as we sit at our most vulnerable with our pants and undies at our ankles because we had to use a non handicapped stall. We need the higher toilet, we need the strong supportive bars, we need the room for our wheelchair etc. we need the handicapped stall, but we hardly ever get to use these stalls. 

We the differently abled do not get to use the stalls that were specifically made for us because someone long ago decided that it is the biggest stall, it's usually at the back of the bathroom so they think they have better privacy and they use it to poop in. I mean seriously this used to be a small minor thing only a few we're brave enough to challenge the handicapped sign on the door, the bathroom was probably quiet and empty they could have chosen any stall but they want the big one in the back where you think your hidden, but you're not...

We know about you we know about your sneaky hidden pooping stall. We know because we have to sit in our wheelchair and wait for you to come out, and you take forever and I have to be honest the smell is not pleasant. We know what you did in our special stall that helps us stay independent, helps us still feel capable of doing some pretty private things all on our own. You don't have a need for the handicapped stall you just think you can get away with using it. 

This is kind of a funny post I know, but it is a real problem for us who are differently abled. 

Please if there are other stalls available and you are not handicapped use them. There maybe someone coming into that restroom that really needs that handicapped stall. 

For those of us that do need the handicapped stalls I almost feel like we should politely remind the able body people who come out of the handicapped stalls that we are physically unable to use a regular stall and would appreciate if they could keep us in mind and keep our stall for us. 

I now notice the changing tables are being placed in the handicapped stalls. A lot of times these are left folded down, it is not easy to get our chair in and fold this out of our way, plus it means another long wait time for a mother in there changing a dirty diaper while we again wait.  I suggest we write a letter to the management of all companies we see this new trend in, especially if there is only one handicapped stall in there establishment let them know how difficult it is for us. Also I would add to mine being on the chemos my immune system can not fight off the germs on that changing table if I have to fold it out of the way. 

We have to fight for better handicapped accessibility everywhere we go so why not start at the bottom. Sorry I love puns and also like ending things on a positive note so hope you all love dorky puns as much as I. 

Thanks again for stopping by my little blog, I hope you enjoyed yourself. Please come back and visit. I promise they will get better. If you really are craving more remember to add me to your favorites and follow my blog. You can sign up to follow me and to receive emails of new posts if you prefer. Should be easy access links to both just right there on the right hand side of your screen towards the top of my page. Thanks again everyone 

The dreaded decent into mobility devices.

     My worst joint has always been my left hip. Yes how dare my RA not be the typical RA that starts in the hands so we know exactly what's wrong. Well now my hands are quickly trying to take over first place, but for now it's still my left hip. When it's your hip that's bad sometimes you have to use mobility devices to get around. So at age 35 I had to get a walker, oh yes it was one of those really sexy old lady ones with a little basket and a cushy seat. Obviously young and in the prime of life is not their target audience. I am not surprised but would we not pimp this out somehow, paint job some cool rims something. Nope the coolest one I could find was electric blue. Oh well not like I'm trying to pick anyone up with my sexy walker right.
     I tried to move quietly into the mobility devices world, thank goodness this thing doesn't have pipes like my husbands harley, but you still have this very large device that works as a neon look at me sign. Well here's the funny thing with a walker I am a flashing neon sign, but somehow once I had to move into a wheelchair now and then I am suddenly invisible. Or maybe it's that people see it as a challenge, lets play chicken with the gal in the wheelchair who's going to move first. The worst part is when they look you right in the eye and then completely cut you off.
     So I'm getting ahead of myself. Last summer my husband said we need to get you an electric wheelchair. I said no way are you kidding, I can walk just fine. He said yes but can you take the kids for a fun day at the zoo or take hikes or numerous other examples anymore...I did see his point but somehow this was a really hard step for me I could see the pros to getting one but did I really want to admit that I was at this point in my disease. To me somehow this seemed like I was admitting defeat.
     I finally agreed with the threat of our insurance changing in a couple of years and many other factors now was the time to make that big step. Have you seen how many electric chair options there are now? Scooters, mobility chairs, electric wheelchairs, my head was spinning with choices...thankfully my salesman works on commission which reassured me he would get me the most expensive, I mean best possible model for me. I learned a few things during this endeavor. Number one is your insurance really doesn't care about your quality of life. You can be trapped in your house for the rest of your life and they don't care. Thankfully the times that my hip has given out on me has been in my own home, which helped make it a safety issue so the insurance company started to take us seriously.
     So long story short and hopefully not to sporadic ..high pain level means somehow my thoughts just don't connect right. I did get an electric chair and a manual wheel chair. Because insurance companies don't care if you ever leave your house again or even go outside of your own home, we have to pay for any ramps ourselves. We also had to upgrade my vehicle as my car was to small to fit the chair into it, but the plus sides really outweigh the negative. I take my kids to the zoo again and so many other places that I just could no longer do. So it has been so worth it to take that leap into the world of mobility devices, now if I could just get them to pimp my chair I need to get Kounts Kustoms or something to help me out because it's just not cool enough for me yet.
     I should have said first and foremost if you haven't done so yet get yourself a handicapped placard! Someone told me right in the beginning to get one and I am so thankful they did because it has been such an energy saver and I'm sure saved me from a lot of pain. No getting a placard is not going to make you pain free, but anything that saves us from a bit of pain is so worth it. You know those days you go to the grocery store with energy and by the time you are done collecting what you need, right before you get the registers the energy troll comes and just steals it all, you are practically crawling those last few feet. You look back going what the heck just happened to me and where's the semi that ran me down. Yes on those days you will be so happy that your car is parked closer. The other thing I have learned is when I have my wheeled friend with me (sexy walker or wheelchair) the handicapped spots will have a ramp to get you up on the curb. Well usually they will, I will save that rant for another post.

Taking off the mask

Did you know that every day an arthritis sufferer wears a mask? That's right we usually try to hide the pain we are feeling, the sickness the everyday tears. Why do we do this? No one can really say...I guess my reason is I feel like people would get sick of it, I mean hell why wouldn't they I am sick of it and I live it day in and day out!
Imagine breaking a bone, now you've got the flu on top of that broken bone, but it's every bone in your body.....So basically a cool story would be I was on this amazing ski vacation and an avalanche came and swept me down the Mt breaking every bone along the way and it took hours for rescuers to dig me out so I ended up with pneumonia on top of it all....yep that's how it really feels, except our bones don't heal, our flu/pneumonia doesn't go away this is everyday for the rest of our lives, the other sad part I don't have a cool story behind my limp. Stranger 'oh did you strain your hip?' me cool answer "No my body is just trying to kill me"...real answer "I have Rheumatoid Arthritis" stranger 'aren't you to young for that' or 'oh ya I have that in my knee' good comeback would be "oh no really, I'm sorry for that, have you started chemos yet because you know it can kill you" in reality I just say "oh sorry to hear that" and walk away. It's always after I walk away from this encounters that I come up with what I should have said, kicking self I could have raised awareness. Oh well I just go out with my smile on my face and when people ask how are you "I'm good" because really who wants to hear I am fevered today (they'll think I'm contagious) I am trying to get everything done before my fatigue knocks me to the ground and my pain makes me unable to put together a complete sentence let alone try to get up and walk..."I'm good" such simple words, what's funny is I have never been a person who can lie, but now I do it almost on a daily basis with two little words "I'm good"
For anyone who knows me please don't make me tell you how I really am. It embarrasses me, somehow I feel weak. Don't ask me what you can do to help, the list is so long I don't even know where to start. Want to really help me? Bring a dinner for my poor family that has to make it all the time, come pull a few weeds so I can at least look out my window to beauty, but please don't ask me how you can help because honestly one of these days I may answer you honestly and scare the pants off of you ;)
How am I really doing right now, I have been in a constant flare, I don't know how much longer I can honestly live like this, but my Husband and My girls always make me laugh and make everyday worth it. Right now my meds aren't working, but I am trying I will never stop searching for something that will work for me. Right now I am treading water, but trust me when things change you will hear about it...I will be shouting it from the roof tops!
Thanks for checking out my little blog, I hope you enjoyed your stay. Small disclaimer I did not make the photo above it has been shared and past on so many times that I can not track the original maker so please count this as giving you credit for your amazing pic.

What is RA anyways

I figured I should write a little bit about what RA is. Rheumatoid Arthritis is not your grandmothers arthritis. I know a lot of people hear Arthritis and think of old joints wearing out, that is osteoarthritis not Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease. Autoimmune diseases are the result of your body mistakenly attacking itself. Yep that's right my body is at war with itself. Rheumatoid Arthritis (RA) attacks your joints and organs, it is a chronic inflammatory disease and so far there is no cure. RA often looks different from one person to the next, so I will tell you some about My RA.
I have low grade fevers daily, debilitating fatigue, malaise (flu like symptoms) and pain. I have to say the hardest part of RA for me is the fevers and fatigue. I have a high pain tolerance  (I went through childbirth twice naturally and yes I meant to). I can push through the pain and get things done, heck I can even go out and have fun through the pain. The fevers and fatigue kick my butt every time though. I just feel like I am trying to do everything while walking through quick sand. Think of how you feel when you have the flu, can't really get much done right, but my flu never goes away. My RA doesn't respond well to the medications that are out there, and if one does work it usually becomes less and less effective until it just stops working all-together.
The medications for RA are chemotherapies, medications that kill your immune system in hopes that your immune system stops attacking you. Since my diagnosis in 2008 I have been through 8 medications, granted one of those I was allergic to, but still 8 medications in 5 years I really need to slow down one day there will be no more for me to switch to. Right now I am waiting for my latest medication to start working, so things have not been going well for me. I am fevered, fatigued and basically feel like every bone in my body has been broken, I haven't been able to do much of anything. I have my next infusion next week and I am really hoping to start seeing some improvement, anything at this point would be wonderful.
There is a bit on RA hopefully you learned something. Short and sweet for now, because trust me there is so much more to all of this, but for now the pain in my fingers is telling me to stop typing and for once I'm going to listen. Trust me there will be more...

Actemra

So this blog was going to be about books, but what can I say when you live with RA it is always first and foremost on your mind.
I have started actemra. It was a hard decision to finally give up on Orencia, but too many side effects and not working well enough and about a year and a half later I finally decided it really wasn't for me. I just read a wonderful blog by Arthritic Critic that inspired me to write about my med change choice.
When I decide to change meds I research the new choices and always lean towards one more than the others. This time I was leaning towards actemra, for me it was the next level step, orencia is 1/2hr infusions, actemra is 1hr infusion so in my mind next step. So I researched like crazy, talked to people taking it and have this pumped up in my head as THE MED for me. That's right guys this is the one that will work, the one that will make me forget I have RA I will be able to do all the things in the obnoxious commercials for RA medications that make you want to vomit because no one with RA can do that. Well actemra is going to do that for me. Want to know the best part...it actually lists that it helps with fatigue and fever, no other med I have seen lists that so you know it's good. Well I started 2 months ago and I haven't had any changes yet. Ok that's a lie I had 2 less painful days that's right 2 whole days that I felt less pain than I have in say maybe 2 years. I'll tell you if you don't have Rheumatoid Arthritis those 2 days will keep me believing for at least 2 years. Those two days were amazing, a paradise, heaven on earth right here for me to experience...but then wham!!! 

Right back to where I was. I should explain the fever and fatigue has been bad enough lately that I can barely get out of bed, then when I am able I walk like I'm 120yrs old (If I can walk) mostly I hobble around enough to get from my bed to the living room, then occasionally from the living room to the bathroom, if you have RA you know that means doing as much as you can while you are up, so usually some sort of food that requires no effort and refill my water. At this point my teenage daughters are doing the grocery shopping, and my husband and daughters do most of the cooking. I feel like half a human and a burden to them, but what keeps me going...that's right those 2 days. I am convinced after the next infusion actemra will kick in and will be working. It has to, I have plans we are going camping which means swimming, river rafting, bbqing, family visits, nature walks and more, so it has to work.
I hope this isn't too sporadic and makes some sense as the pain is high and that causes major brain fog...but more on that later. For now just wish me luck on my actemra adventures.