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.