RA AND THE FAMILY FIT

Are there days and nights you find yourself sitting or laying alone wishing and needing to talk about your illness but who’s there to listen. Where is that someone to hear your words of fear, pain and loneliness! Who’s there to give you comfort in some of your most vulnerable moments. Moments when all you need is love and understanding and someone to say to you “I hear you”.

There are times I spend alone, mostly at night racking my brain about this disease reflecting on how it has affected my life and the toll it has taken on me mentally because it does leave me feeling so alone. Yet this disease does not affect only me and that is why I can testify that all of us are having sleepless nights that result in worn out and exhausted days. Our minds are racing with thoughts of this disease and how nice it would be if there were ways we could reach out and share some of what’s on our minds. Even when we are worried and confused our thoughts are working overtime, we remain quiet. Who is there to talk too, who is willing to listen!

Why is it so hard to talk others about Rheumatoid Arthritis! Is it because it appears to be a straightforward illness and our concerns seems blown out of proportion and they simply don’t grasp how debilitating it can be. What they don’t see is the sadness and loneliness in our eyes and the pain in our hearts as we’re struggling to figure out our path along the way. All we need are caring people to support us on this path. We want someone who we can tell we’re not okay without facing judgement.

Being sick and lonely can be devastating. You have nowhere to turn and no one to turn too. Each time you think about reaching out, you remember this fight maybe yours alone. Having RA tends to chase away those you thought were there for the long haul. People can’t seem to get used to the ups and downs of having this disease and how much control it has over your life. Trying to explain it falls on deaf ears after a few times. There maybe sympathy at first but along the way when things gets tough, understanding and comfort seems to fade. As we try to explain the different phases of our disease and what we’re going through the interest is loss. Simply because this disease is complicated and chronic with many different facets. Because of this, we soon learn we are in this fight alone with few to lean on.

In a world filled with pain and uncertainty, it is a tragedy to be alone when all you may need is a gentle hug, an understanding smile or most importantly someone who will hear what this disease is doing to your life. So my hope is we find that comfort in those in our lives because living with Rheumatoid Arthritis is a burden to heavy to bear alone.

Be Blessed!

This is for all of the Rheumatoid Arthritis warriors. I know your plight and I know that each of you have felt all of these things and wish you could turn back the hands of time.

I have Rheumatoid Arthritis, I wish I could turn back the hands of time
It’s painful, lonely and it totally occupies my mind

I never knew I would face such heartbreak and pain
Never knew people would look at me with such disdain

Having this disease has taken control of my life
Filling it with loneliness, sadness and unnecessary strife

I long to find my way back to the old me
But when I look in the mirror it’s the broken me that I see

I don’t want pity, I’m just saying what is true
Life with RA takes away so much from you

My smile, my joy , the shine in my eyes
Each time I hurt, it’s like a little bit of me dies

My emotions are spinning more and more out of control
But feeling better is my ultimate goal

Rheumatoid Arthritis is such a dreadful and harmful disease
But all I want is relief, can I have just a little bit please

As I fight my way along this uncertain path
I’m fighting with this enemy and its terrible wrath

I have RA , I wish I could turn back the hands of time
And if I could, I would not have this difficult and hard mountain to climb.

Be Blessed.

Having Rheumatoid Arthritis is a painful and chronic inflammatory condition that reeks havoc on ours bodies, organs and mental health and there is no cure. Dealing with pain each and every day makes life miserable so relief is all that we strive to obtain. Our journey begins with an effort to find the right medication to help us function to the best of our abilities. Going through the process of finding a medication that works for your specific needs can be a long and daunting challenge.

Getting diagnosed is just the beginning of a neverending battle but the struggle to find a medication that will work for you makes it even harder. Being diagnosed is traumatizing in itself but the road ahead can and will have lots of twists and turns. You’re dealing with your diagnosis trying to come to terms with it along with what is next in your journey including a search for medications. That process is one that many of us dread no matter how short or long that walk has been on the merry-go-round of “will it work”.

There is actually a process to this medication journey. One some of us chose to take and others decide they just won’t do it. The first line of meds usually is metrotrexate which seems to be the one for pretty much everyone but it doesn’t always work as we often learn on our long ride to finding relief from pain but most importantly, to stop the progression of this horrible disease. What are our choices:

Is it DMARDS-Disease Modifying Antirheumatic Drugs : hydroxychloroquine, Metrotrexate, Actemra and Leflunomine
Janus Kinase Inhibitor: Xeljanz
Is it Biologics-Tumor Necrois Factor/TNF Inhibitors: Humira, Cimzia, Enbrel, Simponi and Remicade
B-Cell Inhibitors: Benlysta and Rituxan
Interleukin Inhibitors: Kineret, Tremfya, Taltz, Skyrizi, Kevzara, Cosentyx and Stelara
Selective Co-stimulation Modulator: Orencia

My goodness, so many medications to treat our disease and believe it or not most of us have or will go through the majority of them if not all of them. Some will have the unfortunate task of taking multiple medications at a time. This does not include any over the counter medicines we’re forced to take in dire times yet for some, none of these choices will work. It is and always will be a tedious struggle with this part of our journey and it does not stop here.

Now for the complications we may face with the side effects of taking these medicines. We’ve seen the commercials naming them which has scared us all to no end. You’re afraid because they can be harmful, though not always. Just hearing those words and reading about it sends your mind into a tailspin. You find yourself wondering is the risk worth it, yet you know your disease must be controlled because it has already changed your life in more ways than you can imagine. What should I do is the question you’re asking yourself over and over again. We all want relief from the pain but more than anything we want to be safe while doing it. Being Blessed enough to find something that works with no side effects and long lasting is a joy we all hope and pray for.

Getting it right isn’t easy nor fast. It will take our lifetime because we will forever be fighting this disease trying to find balance while living with it. Taking medication is only part of the struggles we face and it brings so much uncertainty along the way and it is a heavy weight we all bear. I myself am struggling to decide whether or not to start a biologic because of the side effects. My age is making my decision very difficult so I understand what each of you feel when trying to make your choice. It is scary, it can be lonely and emotional but I hope each you find what works for you and it treats you well. I can truly say “I Understand Your Struggle”.

Be Blessed.

Rheumatoid Arthritis is a pretty dreadful disease. It is debilitating, can be deforming, painful and so misunderstood. No one understands those words more than a person who suffers with it. Not only is it a physical disease it is an emotional disease.

Many may think RA is the same as arthritis or osteoporosis, though they are all painful, it is not. RA affects the immune system which in turn can affect the organs causing traumatic damage. Physically it can be harsh to your joints leaving you with unsightly disfigurements. Something that wears on you physically and mentally causing you to spend countless days in bed.

Rheumatoid Arthritis is unpredictable. Though medication is prescribed to control it, there are no guarantees that any medication will work. The DMARDS or injections medication or infusions don’t always offer the outcome we hope for. We still often find ourselves in bed or curled up somewhere nursing our pain. There may be temporary relief at best if we are lucky. We have to take this journey in order to keep this disease at bay to hopefully prevent further organ and joint damage. Do we succeed! The journey is always ongoing.

There is the emotional toll that no one realizes comes with having RA. Not being able to function normally makes life sad, hard and have us overwhelmed with guilt. Though everyone may not have the physical disabilities we are all saddled with more painful times than we can count. Looking normal is just that for us but we are reeling with pain even in times when we don’t show it. Yet there are those days when we actually cannot carry on. We aren’t able to take care of ourselves let alone others. This you see is where the emotional guilt takes over. We can’t bear not being able to take care of those in our lives. It is one of the most important losses that we face.

What everyone needs to understand, this disease absorbs our days. We work around it from the moment we wake up until we go to bed. From the pain we endure, to taking medication, to trying to function, to hoping it’s a good day and finally hoping for a good night. All of this due to the fact that we have an autoimmune disease that many think can be easily treatable. In reality, Rheumatoid Arthritis is very serious physically, emotionally and can be deadly. This is no myth.

Be Blessed.

Being a woman with Rheumatoid Arthritis, I can tell you it is very difficult to say the least. There is so much more for us to deal with than one can image. Let me tell you a little bit about a woman’s struggle with this disease.

As women, we are already above average in getting this disease, imagine what pressure that can put on you. Our hormones are often out our control even when we don’t want them to be but that is the anatomy of being who we are. The hormones that makes us who we are is a part of what puts us more at risk for RA. Along with this comes our guilt of wanting to deal with the pain and suffering of this disease but opting to keep it all to ourselves instead. Often this causes bouts of depression and anxiety which takes its toll. When this happens, there is this overwhelming sense of aloneness because no one understands exactly what you’re going through. You’re fighting RA while being on an emotional roller coaster seeking balance to cope.

It is said women are three time more likely to get RA than men, imagine that. This alone makes us stand out. It is suggested that females have stronger immune system responses than males however a heightened immune responses may also mean females immune systems are more likely to attack healthy tissues, putting them at risk of developing autoimmune conditions such as RA. We are 75% of the patients with this disease. We may have stronger immune systems but it does not make us a lone warrior but adds to our plight. How do women cope!!

Being a mom, wife or a single woman with RA you find that your life doesn’t stop when you are in pain. Women find they have to be strong for themselves and those in her family. She still has to carry on with taking care of so much of everything. There is the neverending pace of making everything right for everyone while hoping to fit yourself in at some point. You find that you are tired, worn out and racked with pain but you don’t stop because that is the nature of the woman.

The psychological aspect is hard because we often give up our self care to keep going for the sake of others. The toll Rheumatoid Arthritis takes on the body weighs heavy on the mind. Guilt is one of our worst enemies because we don’t want to feel like a failure even though our bodies may be failing us in the process. At the end of each day and in the quiet of each night, we maybe suffering in silence from the overload we’ve put in all day. Our work it seems with the pain is never done.

When we find time for ourselves, we sit with the realization of what this disease does to us, what it takes from us and how it dictates our lives. But as women we find strength when there is none and we give in only when we truly have to, yet we still struggle on. This is how it is being a woman with Rheumatoid Arthritis, a true Warrior in the midst of the Odds.

Be Blessed.

With RA we suffer from fatigue, some with depression and a host of other things along with our disease.  It is in these circumstances that we find ourselves struggling to do the many things we have to in a day’s work.

While doing the many things in our daily lives, we are faced with the daunting task of fighting through some of our biggest challenges.  Take a moment, think about it, which is your biggest challenge. 1. pain,  2. fatigue,  3. depression,  4. additional illnesses,  5. loneliness,  6. forgetfulness,  7. sadness,  or 8. all of the above and then some.  We do face many challenges, some we can fight through quickly, some that takes a little bit longer and some that takes quite a while but we face those challenges the best we can.  This is what makes us warriors and makes us strong.

Even though we struggle with Rheumatoid Arthritis, we strive to remain strong even at our weakest. We have conditioned ourselves to believe we have to take care of everyone and everything out of guilt. You see guilt is an emotion that permeate our lives and takes its toll on us making us less than 100% to anyone including ourselves.

Rheumatoid Arthritis, what do you have to say about it. So much it overwhelms your mind. It is a disease of the body that affects your mind. There is no easy way to make people understand just how it is to live with a debilitating disease like RA. One of the many autoimmune diseases that affect so many of us, more women than men by the way.

This isn’t a blog about pity, it is a blog about reality and the reality is, Rheumatoid Arthritis is a disease that changes the lives of people slowly sometimes other times in a more aggressive fashion. Are you prepared either way, No! It moves in and changes everything about your life. Your normalcy is gone forever and what you’re about to learn things many may not even imagine.

You will leave behind what you were accustomed to in life and prepare for the new life RA has in store for you. Life as you knew it will slowly slip away day by day bringing with it an emotional ride you won’t be prepared for. You will learn just how much strength you will need and how much you will come to rely on that strength when your body and mind goes through more than you could imagine. Pain throughout leading you to sadness and emotions that will also change you forever. Being sick and the guilt of being sick from a disease you cannot control is something that others won’t fully understand.

Suffering from Rheumatoid Arthritis takes its toll on us. It is a defining factor in all that we do from the moment we get up until we go to bed. It dictates our days determining whether or not it will be one that we can tolerate or one that puts us into bed. Dealing with the also uncertainty takes its toll and the ups and downs we face cannot be explained fully to those who don’t experience it. It is difficult to explain to anyone how you may be okay one moment and the next at your worst. As unbelievable as that may seem, it is the reality of having an autoimmune disease. We are sick, limited, sad and guilt ridden because we are unable to be the person we were before RA.

Rheumatoid Arthritis is a controlling disease. It controls our pain, emotions, days and dynamics but we continue our fight in this battle. We want everyone to understand we are working against this disease and it dictates what we can and cannot do. Though it doesn’t appear this way, it is our truth. Trying to control RA is an ongoing struggle, one we deal with each and every day. We should not have to defend having a disease we neither want or asked for!!

Be Blessed.